Hi everyone,

If you follow me on social media, you might have seen my recent post where I shared one of my absolute favorite stress relief techniques: the 4-7-8 breathing technique. This simple yet powerful practice, developed by Dr. Andrew Weil, has been a lifesaver for me in moments of stress. While I’m not usually one to advocate for over-regulating breath, this technique stood out for its immediate calming effect, and I’ve been using it ever since I was introduced to it.

For those of you who haven’t tried it yet, the 4-7-8 technique is super accessible. Here’s a quick breakdown:

1. Exhale completely through your mouth, making a whoosh sound.

2. Inhale quietly through your nose for a count of 4.

3. Hold your breath for a count of 7.

4. Exhale completely through your mouth, with a whoosh sound and rounded lips, for a count of 8.

Dr. Weil recommends starting with four breath cycles, then gradually increasing to eight cycles over time, practicing twice a day for the best results. You can read more about it in my recent Instagram post here.

Why Stress Relief Matters When Living with Chronic Illness

Stress has a profound impact on the body, particularly for those of us living with chronic illness. If you’ve been following my journey, you know that learning how to manage stress has been a huge part of my healing. Stress activates the body’s sympathetic nervous system, triggering the fight-or-flight response, which can increase inflammation, worsen fatigue, and make symptoms of chronic illness more severe.

That’s why I’m so excited to share this practice and many others at our upcoming Masterclass on Overcoming Chronic Illness Burnout, which I’m co-hosting with Jayci Gibbs, a Millennial Burnout Coach, on October 30th at 4 p.m. PT / 7 p.m. ET. This masterclass is designed to provide both immediate stress-relief tools and long-term strategies to help you better manage the ongoing pressure that can come with chronic conditions.

What to Expect from the Masterclass

In this 1-hour masterclass, we’re going to cover the intersection of chronic stress, burnout, and chronic illness in depth. Here’s a sneak peek of what you can expect:

• Understanding the Neuroscience of Stress: We’ll walk you through how stress affects the nervous system, especially in individuals with chronic illness. This will help you better understand the stress cycle and how it impacts your body physically, emotionally, and mentally.

• Practical Tools for Stress Management: You’ll learn a variety of accessible techniques—including the 4-7-8 breathing exercise—that can be used to reduce stress in both the short and long term. These include breathwork, meditation, and other mindfulness practices.

• Building Nervous System Resilience: Nervous system regulation is key to managing chronic stress and reducing symptom burden. We’ll show you how to strengthen your nervous system over time, making it more resilient to stressors.

• Creating Space for Healing: Whether it’s through stress management, setting boundaries, or making space for rest, we’ll explore how to prioritize yourself and create a healthier relationship with your body and mind.

• Increased Confidence: One of the outcomes of this masterclass is that you’ll walk away feeling more confident in using these stress reduction strategies. Techniques like the 4-7-8 breath can feel intimidating at first, but with hands-on guidance and practice, you’ll feel empowered to integrate them into your daily life.

Who This Masterclass is For

This masterclass is designed for:

• Anyone living with chronic illness who feels burnt out, overwhelmed, or stuck in a stress cycle.

• Individuals seeking practical tools to reduce stress and inflammation, and improve overall energy levels.

• People curious about nervous system regulation and how it can help manage chronic illness symptoms.

• Those looking for accessible, easy-to-incorporate techniques for both immediate stress relief and long-term resilience.

• Anyone wanting to create more space for healing by learning how to balance stress management with self-care and rest.

Tickets are still $25 until October 25th—grab yours now before the price goes up! The link is here and below, and I encourage you to reserve your spot ASAP before they’re all gone.

I can’t wait to see you there and share these amazing practices with you. If you’ve ever been curious about how to manage burnout and chronic illness in a holistic way, this is the perfect opportunity to learn and grow in a supportive community. Feel free to reply to this email if you have any questions!

With love,

Lauren x

TICKETS: https://www.eventbrite.com/e/overcoming-chronic-illness-burnout-masterclass-registration-1041689450187?aff=ebdssbdestsearch

Overview

Last episode as of Dec 2023

Emily Ana Levy is a distinguished social impact entrepreneur, renowned patient advocate, healthcare Key Opinion Leader, and acclaimed international public speaker. Emily's journey led her to co-found Mighty Well in 2016. It’s a startup driven by her personal experiences as a patient grappling with chronic neurological Lyme disease and autoimmune conditions, along with the challenges of managing vascular access devices. Mighty Well's direct-to-patient brand offers innovative medical products and comprehensive digital learning on vascular access, empowering patients to confidently navigate their health journey. With an unwavering commitment, Levy and her team have successfully launched seven adaptive medical products, notably the Class 1 FDA-registered PICCPerfect® Pro. Emily and Mighty Well's impact has been featured across various media outlets such as The New York Times, The Wall Street Journal, Who What Wear, The Boston Globe, PBS, Forbes, and more. In 2021, inspired by her transformative healing journey in the Amazon and stepping into her gifts as a seer, medium, and deathwalker, Emily established Hamsa Healing. In her practice, she is dedicated to facilitating clients in experiencing profound healing practices from the Amazon and the spiritual realm — practices that played a vital role in saving her life and putting her chronic illnesses into remission. Currently residing in Providence, the heart of the Ocean State of Rhode Island, Emily finds solace in cold water plunges that invigorate her senses and ground her in the present moment. She cherishes moments at home with her two adopted poodles, a warm blanket, and a cup of tea; valuing introspection over bustling networking events. Emily remains devoted to self-discovery, eager to share her insights with folks who, like her, have felt marginalized within a business and medical system that often overlooks their needs for visibility, understanding, and validation. What started as an entrepreneurial journey to 'turn sickness into strength' has now become one of learning strength from sickness.

Key Links

Mighty Well

Dr. Casey Kelley on UP - Ep 118

Takeaway

Tune in as Emily shares:

* that she’d blocked out a memory of being bitten by a tick at the age of six; she was bitten again at the age of 12, alongside having confirmed EBV

* what her initial symptoms were like

* how she was overlooked because of her age and gender — and initially put on birth control to control her “hormones”

* that she finally found a Lyme-literate NP in her home state when in college — and received the diagnosis of Lyme and tick-borne illnesses at the age of 19

* her additional diagnoses: POTS/dysautonomia, Hashimoto’s disease, CIDP (chronic inflammatory demyelinating neuropathy), C-PTSD, and Gilbert’s syndrome

* that she went to see Dr. Casey Kelley after hearing her episode of the show!

* how her lived experience informs the creation of adaptive devices and wearables for Mighty Well

* how she was able to embody her identity as a disabled person — coming from a family of athletes

* that she had a lot of Lyme support in college, but also felt “othered” in the sense that she had to advocate for her health for the first time

* what a typical day was like for her before remission

* her rumination on the invisibility of her diagnoses — and their few visible signifiers, which included her PICC line and chest port, as well as her occasional use of a cane

* how exhausting it can be to tell people your life story when you live with invisible illness and have to provide validation to others

* the epidemic affecting women in healthcare: acute infections, especially those presenting with multiple and varied symptoms — and how important it is to listen to and include women, both in treatment and in research

* how her family background in textiles informed the Mighty Well product line

* her advice for fellow spoonies and entrepreneurs

* why living near the water is so important for her

* that she has trained her dog, Olive, as a medical alert service animal

* her belief that ketamine therapy saved her life, with regard to the diagnosis of C-PTSD

* her endorsement of plant medicines and herbs, and why she has moved in that direction where her ongoing treatment is concerned

Dailyn Santana is a first-generation Cuban-American actress, keynote speaker, spoken word poet, and mental health advocate. Her work focuses on eradicating mental health stigma and her personal experience of living with bipolar 1 disorder, depression, and anxiety. Her mission is to be an example that those living with mental illness CAN live a happy, fulfilling life. She believes that living in your truth is the most powerful tool you can have, and performs her spoken word poetry at events and schools/universities across the country. Her work has been featured on or at The Dr. Oz Show, ALL DEF Poetry, Nuyorican Poets Cafe, Swaay Magazine, I and I Outfitters, We All Grow Latina, and Spiritú, and she has collaborated with Mitú, the BeVocal SpeakUp for Mental Health initiative, BeRemarkable Foundation, The Womens Empowerment Network, the American Foundation for Suicide Prevention, and the National Alliance for Mental Illness.

Tune in as Dailyn shares:

• when she first experienced mania and psychosis — but that she lived without diagnosis for at least a decade
• how she was haunted by stigma and shame from the early days of her diagnosis
• how her diagnosis affected her relationship to her creative outlet: poetry
• the role her cultural background played in her relationship to her diagnosis and care
• why she came out of her “bipolar closet”
• how she interviews potential practitioners, and her tips for others looking for a new therapist
• why her diagnosis doesn’t define her
• how she became a mental health advocate
• what a “warm line” is, and how helpful it can be (see the links in show notes for some directories!)
• why asking for help is a sign of strength

Emily Dwass is a writer living in Los Angeles. Having written for numerous publications about food, health, and cultural issues (including the New York Times, Los Angeles Times, LA Weekly, Chicago Tribune, and USA Today), she also served as the “Kid Health” columnist for the Los Angeles Times for four years. She has also written several feature scripts and been a writer on TV shows produced by Disney and Lifetime, among others. A writer by training and trade, she holds a degree in creative writing from the University of Illinois, and a master’s degree from the Medill School of Journalism at Northwestern University. Several years ago, she struggled to receive effective medical treatment and was forced to have a craniotomy to remove a non-malignant brain tumor. This experience led her down the rabbit hole of  adverse women’s health experiences – and she began research into the depth of medical bias, discovering how both medical research AND the health system are, in many ways, rigged against women’s better health. This served as the jumping-off-point for her groundbreaking book, Diagnosis Female: How Medical Bias Endangers Women’s Health. In this episode, she sat down with Lauren to discuss her personal journey and what she discovered. Both shocking and revelatory, her exposé reminds us that health is a human right, and gives us hope that with accurate information, we can begin to better serve everyone. 

Join in as Emily shares… 

- the focus of her book: cardiology, neurology, autoimmunity, and gynecology 

- that she had strange neurological symptoms for 4 years, at which point she was incorrectly diagnosed with Guillain-Barré syndrome – but never offered tests (MRI) to confirm the diagnosis 

- that she was eventually given the correct diagnosis of a meningioma – a non-malignant brain tumor that had been growing for years – and offered a craniotomy to remove it 

- that if she’d been diagnosed years earlier, she would have had more treatment options – including one-day radiation – as opposed to the craniotomy she was forced to have 

- that she had a recurrence of the meningioma, and this time was treated with one-day radiation 

- that her meningioma recurrence wasn’t noticed early on, because it was revealed that her physician likely hadn’t personally reviewed her imaging 

- about the concept of empathy, and the patient-doctor dynamic 

- her family’s choice regarding health insurance after she was diagnosed with her meningioma 

- that she didn’t share with her employers about her diagnosis – because in Hollywood you can’t be “female, old, and sick” 

- the concept of hysteria, and how an antiquated idea has trickled into modern women’s healthcare 

- that for most of medical history, research has been done not only on male humans – but also on male tissue, cells, and animals – which reveals massive gaps in our knowledge and understanding 

- that all of medical research excluded women until 1993 

- that it wasn’t until 2016 that the NIH included sex as a biological variable in research – and mandated equity of male and female cells (which still isn’t always followed-through on) 

- that disparities in research filter into clinical care – in that males are considered typical, while women are considered atypical – leaving women with a systemic lack of recognition in the medical industry 

- concerns with medical devices, particularly in gynecology – which are often approved without proper research. The most poignant example is the use of power morcellators, which have been known to spread cancers during/after fibroid removal (and examples in which women haven’t had voices in their own care) 

- that doctors can have relationships with companies that design medical devices or produce pharmaceuticals, which can influence your care 

- that the #MeToo movement may help women become stronger self-advocates in their medical care 

- that women of color are disproportionately misdiagnosed, under-diagnosed, and generally disregarded by the medical industry 

- the concept of medical trauma, and that women of color experience greater micro-traumas over time, which add up 

- her advice: have an “elevator pitch” for your doctor visit, bring an advocate, and don’t be afraid to get a second opinion 

Atlanta native Samantha Denäe is a former magazine writer and entertainment blogger-turned novelist, poet, and screenwriter. At the age of 24, she was diagnosed with endometriosis – and turned this devastating revelation into a gift, making it her mission to educate women around the world through partnerships with the Endometriosis Foundation of America and The ENPOWR Project’s Endo Edukit, among others. An outspoken advocate for women living with endometriosis, she bares all in educational workshops and social media posts. While holistic approaches have helped her begin to control her symptoms, she presents a unique take on the nature of women’s pain – and whether or not we were born to suffer. 

Tune in as Samantha shares… 

- that she has lived with pain and nausea since she was 12 years old 

- that she was initially brushed off and offered ibuprofen for her pain and long, heavy menstrual cycles 

- that she was diagnosed in 2014, and first heard the term “endometriosis”  weeks before graduating from college – after a near-codeine-overdose (and not being educated on narcotics by the doctor who prescribed them) 

- that she was given the firm diagnosis of endometriosis when she had cysts removed 

- that within 3-4 years, she went from stage 1 to stage 4 endo 

- that she experiences bladder difficulties because of the growth of endometrium and scar tissue – mainly urgency – but that she still needs excision surgery 

- that endometriosis spreads like a cancer, and is also the precursor to ovarian cancer if left untreated 

- the misconception that full hysterectomy or pregnancy can reduce/remove symptoms – and that these options are not fail-safe 

- that for years, she tried to convince herself that her pain was manageable 

- that she deals with pain and fatigue regularly, in relation to her cycle 

- that negative self-talk produces negative reactions in the body – and she’s learned to shift her anger at her body into love and acceptance 

- that she’s come to the realization that she lives with endo for a reason – to be an advocate for others 

- that she experienced depression in the early stages of her diagnosis and treatment – and that she continues to experience anxiety around every menstrual cycle 

- the effect that endo has on female fertility 

- that she has tried many methods of birth control, and none regulated her period and endo symptoms – most gave her 90-day cycles 

- that giving up birth control, yoni steams, meditation, and diet change have been the most useful methods of symptom regulation for her 

- that she’s wary of hormones in food – particularly in meat and dairy – and has removed chicken and dairy from her diet accordingly 

- that endometriosis has had an adverse effect on her romantic relationships – in that her fertility is effected, and that sex can often be painful 

- that women with endometriosis have their own shock to deal with before handling a partner in the picture – and that healing from trauma is ongoing work 

- the importance of connecting spiritually with a partner before jumping to sex – especially when you have to make physical adjustments because of a medical condition 

- that her mother was the most difficult person to explain her endo to – and was against her first surgery until her doctor sat her down and explained it all to her 

- that at one stage she was given chemo treatment for her endo, which put her into early menopause 

- that she really connected to the community through social media, and that this connection has truly aided in her healing 

- that through social media, she connected to other women of color living with endometriosis – and that this was particularly poignant because it’s not a condition often discussed in her community 

- that children aren’t learning enough about reproductive health in school – including menstrual cycles and more complex conditions 

- that the focus of her advocacy is in educating kids 

- the misconception that endometriosis doesn’t occur among black women 

- the lack of information and research on endometriosis among black women 

- the total misconception that African American women can stand higher levels of pain 

- the high suicide rate associated with endometriosis 

- her opinion that birth control is a form of general population control – and was invented in order to stop black women from reproducing 

- the connection between birth control use and rising infertility rates in the US 

- her favorite green smoothie recipe 

Lara Parker is a writer living in Los Angeles. She rose to popularity after publicly discussing her issues living with endometriosis and comorbid conditions, including vaginismus, vulvodynia, vulvar vestibulitis, PMDD, pelvic floor dysfunction, and interstitial cystitis, among others. You may remember her from the short-form docuseries Can We Cure, in which she and fellow Buzzfeed producer Kelsey Darragh tried laser therapy in an attempt to treat their chronic pain (new flash: Lara still uses laser – in case you were wondering, like I was!). Here’s the thing about Lara: she is as real as they come. She sees and acknowledges her privilege, she is unapologetically self-possessed, and she’s mad as hell (listen in to find out why). Her first book, Vagina Problems – a collection of essays that discusses the effects of endometriosis and chronic pain on her life and relationships – comes out October 6th, 2020. 

Tune in as Lara tells us… 

- that she first started noticing abdominal bloating and pain when she was in 6th grade; but she didn’t take her conditions seriously until about 3 years ago 

- that she has been diagnosed with 10-12 different conditions 

- that she was diagnosed with endometriosis about 6 years ago – through laparoscopic surgery (which is invasive and cost-prohibitive) 

- that the surgery she had in order to diagnose her endometriosis made her pain worse 

- that she also lives with constant bladder urgency 

- that women’s health issues are constantly brushed off as not serious – and this puts women’s health at risk 

- that she has almost always had pain during penetrative sex and orgasm – and felt betrayed by her own body for years 

- that she has had to go from hating her body to showing it love 

- that she’s had to untangle not only physical trauma, but also emotional trauma 

- that her work in therapy is to reframe her experiences 

- that she’s become very forthright in communication because of her conditions – not only with sexual partners, but with others, as well 

- that she no longer blames her body for her experiences – and no longer makes apologies for what she needs 

- that she is grateful for her Spoonie support community, from whom she’s learned so much – and to whom she credits her increasing confidence 

- that writing became an outlet for her – because she didn’t know how to talk about her adverse health experiences 

- that she didn’t know what kind of support she needed…or how to ask for it 

- that despite the few good eggs out there, she doesn’t feel doctors are on her side – because historically, they haven’t been 

- that she has shifted the anger she used to have toward her body to anger she channels at the doctors who treated her negligently in the past 

- that unless you’ve experienced chronic pain, you cannot understand it 

- that endometriosis is a progressive disease – and for her, it’s gotten worse over time 

- that chronic pain is systemic – if it affects one area in your body, it can begin to affect others as you compensate in your behaviors 

- that chronic pain makes you work harder 

- the importance of an empathetic workplace 

- that most doctors really don’t know how to handle chronic illness, and tend to get frustrated when they can’t treat in their own specialty 

- that the most caring practitioners she’s encountered have been holistic practitioners – as opposed to traditionally-trained Western doctors 

- that she pursues an integrative approach in her treatment 

- that her great grandmother was institutionalized…and she wonders if she could have had similar symptoms that were simply misunderstood in her time 

- that she uses medical marijuana for pain management, as opposed to opioids 

- that a hysterectomy is not a cure for endometriosis 

- that endometriosis is consistently underplayed by the medical establishment and beyond 

- that the diagnosis and treatment of endometriosis amounts to a public health crisis 

- that birth control was more of a hindrance than a help to her, but, as with opioid use – she can’t judge anyone for using these drugs, as needed 

- to remember that doctors work for you, and that you are the boss of your body 

- that she will always seek pleasure despite her pain, and will never give up sex and orgasms 

At this point you’re all pretty familiar with my voice, right? Well, as we head into the holiday season and close in on our one-year anniversary (!!), we thought it was time we gave you what you’ve been asking for: more of me! This episode was initially recorded for a FB Live appearance with Naomi Batty of Holtorf Medical Group – and we had such a great chat, I thought it would make the perfect round-up for 2019 and give everyone more of an insight into my WHY – and how the podcast was born out of my adverse health experiences. Learn more about my journey through Hashimoto’s disease, sleep apnea, depression, and anxiety – and how I’ve found strength in the community that Uninvisible Pod has given me. Y’all are my secret sauce – and if I know how to do anything, it’s how to tell stories…and give you the platform to share yours. Here goes nothin’! (Please also note: this episode was recorded a few months ago, and in it I mention I am a finalist for the WEGO Health Awards 2019. By now you probably know – I won!) 

Listen in as I share… 

- how I was first diagnosed with Hashimoto’s thyroiditis and sleep apnea 

- how common thyroid disorders can be 

- why I think I was sick way before I was diagnosed 

- how functional medicine was my saving grace 

- how I sought resources after being diagnosed, and didn’t come up with much 

- how to find support and resources, and to navigate through your own pride 

- how I’ve treated my Hashimoto’s – with combo therapy 

- how I experienced medical gaslighting: from a female endocrinologist I used to see 

- how I’ve found peace with my body as it is now – and show it love 

- the importance of staying open-minded to treatment options when you live with chronic illness 

- how I learned to advocate to myself 

- the importance of follow-up – and how it’s your responsibility to yourself as a patient 

- the value of finding a doctor who is able to make time for you 

- how empowering it is to become an involved and educated patient 

- that it’s not all in your head – and you know your body better than anyone else does 

- how getting sick forced me to communicate better than ever with my nearest and dearest 

- that most autoimmune disease starts in the gut 

- how peptides and supportive supplements have aided in my healing 

- the importance of reducing everyday exposure to toxins – in makeup, skincare, hair care, household cleaners, etc. 

- why I am a student of my body, and follow its shifts both excitedly – and accordingly 

- how I healed my relationship with food when I adopted AIP 

- how Uninvisible Pod was born organically from my experience and background 

- the importance of diversity in the discussion of invisible chronic illness – and how I’m continually working to address those gaps in the conversation 

- how great it is to find a community – and fellow Spoonie friends 

- that things are not any less complicated post-diagnosis: they are just complicated in different ways 

- why we have to be open to changing our own stories 

Join us as we revisit some past guests to discuss new topics! Trishna Bharadia and Anisha Gangotra are sisters – both thriving with their own chronic invisible illnesses. Trishna lives with MS (multiple sclerosis) and works tirelessly as a patient advocate; Anisha lives with UC (ulcerative colitis) and has also survived PTSD (post-traumatic stress disorder). Anisha was inspired by her own journey to begin teaching inclusive dance classes – which Trishna frequently attends! The two are a wealth of information and experience, and are incredibly close…chronic illness seems to have brought them closer, rather than pushing them apart. In this episode, Lauren sits down with them to get more into the nitty gritty of their healthcare experiences – including their take on the NHS. 

Listen in as Trishna & Anisha share… 

- that Trishna was diagnosed with MS before Anisha was diagnosed with UC – in 2008 

- that they live with their parents, and there have absolutely been growing pains as they’ve both endured symptoms and diagnoses 

- that they understand each other so much more now that they’ve both received chronic illness diagnoses – and that ultimately, these conditions have made them closer 

- that they expected to be taking care of their parents by now – but that their reality is, in fact, the opposite 

- that the try to socialize more locally now, and with friends who understand what’s going on with them 

- understanding the cost of medical care within the NHS 

- that certain communities restrict or stigmatize access to medical care 

- the difficulties of NHS branches being disconnected by region 

- the advantages and disadvantages of nationalized healthcare – within the NHS as we currently know it 

- their thoughts on the future of healthcare in the UK 

- the levels of responsibility that fall upon patients within a nationalized healthcare system 

- that we all become patients at some point – and so we all need to get involved in understanding and advocating for the best healthcare possible 

Camille Thornton-Alson is a classically trained actress, coach, and teacher. A longtime friend of Lauren’s, the two met while studying abroad in London – right before Camille began a stint in Paris at L'École Internationale de Théâtre Jacques Lecoq. Following her stay in France, Camille returned home to the Bay Area and was immediately stricken with a mysterious illness…one that took her almost a decade to break through. Mistakenly diagnosed with chronic fatigue syndrome, for years she struggled to find her footing while maintaining an active career in the arts (and graduating with a MFA from the University of Washington). Eventually, she was diagnosed with lead and mercury poisoning…and after years of inner remediation (think major detoxing and every change in diet – and in mindset – that you can imagine), she now lives a full and functional life, mindful of her sensitivities. She teaches acting at Santa Barbara City College and USC, among others, and is the co-founder of Speak LA, an organization founded to help actors find their way in Hollywood. In this episode, she sat down with Lauren to share her journey – long and winding, but with a happy ending indeed. 

Tune in as Camille shares… 

- that she first got sick at 19 years old – and got progressively worse over several years with various infections 

- that she finally decided to do something about her illness after collapsing in a dance class 

- her symptoms: inexplicable chronic pain, fatigue, infections, brain fog, an inability to digest food, and muscle weakness 

- that she advocated for herself early on: sitting her doctors down at that young age to give full health histories  

- that her doctors told her she had CFS, and that she’d have to learn to live her life that way 

- that it took 7-8 years for her to get the diagnosis of lead and mercury poisoning 

- the fine line she walked between giving up and striving through her illness 

- that she lost a lot of friends during the period of her illness 

- that the only people she could keep up with were seniors in a Tai Chi class – but it was very nourishing to move and commune with others 

- that she would spend the week before and during her period almost unable to open her eyes from her crippling fatigue 

- that she saw her life passing her by, and struggled to find beauty in who she was and in her experience 

- that she came down with EBV while in grad school 

- that early integrative testing indicated a thyroid problem – but her integrative doctor had a feeling that the thyroid problem was tied to something deeper, so she kept digging…and found lead and mercury poisoning that were off the charts 

- that she made a decision very early on that she would not die 

- that the illness bred an underlying fear in her: would she make it through today, or survive tomorrow? 

- how she gave in to healing protocols and moved forward despite her fears 

- that she went through a grieving process once she was better, because she’d fought so hard for years and realized her survival, fully acknowledging her past 

- what she learned from her illness – that the gift of chronic, life-threatening conditions is that you learn to take care of yourself 

- that she felt resentment through her healing, feeling she was denying pleasures to herself – but so appreciates the importance of her protocols in her current, full health 

- that the biggest change in her life was in changing the way she ate 

- that it wasn’t only diet that allowed her to detox: she also used in-office IV chelation for a full year, during her final year of grad school 

- that none of her chelation treatments were covered by insurance – but they saved her life 

- that surviving chronic illness gives you a deeper understanding of humanity – and deeper empathy 

- that self-advocacy and survival can be a lonely road 

- why she believes that there is always a diagnosis – an underlying cause 

- that she was additionally diagnosed with fibromyalgia – which was actually a symptom of her lead poisoning 

- that your body loves you and is on your side – but it’s trying to tell you what’s wrong 

- that getting sick forced her to check her ego 

- how gratitude has transformed her mindset 

- that she continues to choose – on a daily basis – to make her wellness a priority 

Thomas Smith is a an international consultant providing expert patient insights; diagnosed with cystic fibrosis (CF) as an infant and taking control of his livelihood in his late teen years, he is now involved with numerous patient advocacy groups that span the rare and chronic disease spectrum, with a focus on mental health. A former member of the European Health Parliament in Brussels, he’s an expert patient reviewer for the European Medicines Agency, a trustee at Britain’s biggest national mental health charity, Mind, and works for the Research Ethics Committee (as part of the Health Research Authority) of the NHS. He also works with patient organizations all over Europe, including the European Patients’ Forum, EURORDIS, and EUPATI. Combining experience of policy, clinical research, and media representation skills with an unshakeable belief that meaningful patient involvement is key for sustainability and meaningful innovation in healthcare, Thomas is a constructive challenger of the status quo. As in previous CF patient interviews, you may hear him clearing his throat periodically throughout this interview – it is to be expected![Text Wrapping Break] 

Tune in as Thomas shares… 

- that he was diagnosed with CF as a baby, and later fitted with a gastrostomy that he has since removed 

- that it was as a teenager that he decided to take control of his health – and come to terms with his life with chronic illness 

- that he was later fitted with a passport (similar to a central line) that enables him to get drugs directly into his system through a vein in his bicep 

- that he started taking better care of himself because he didn’t want to present like a sick person – and he now does physical therapy 2-3 hours daily 

- that his physio is time-consuming, and while it’s not the most enjoyable part of his day – he loves that it enables him to get out and live his life with purpose 

- that his CF care team never discussed life expectancy – and he doesn’t see the benefit of discussing it at this stage, because he likes to focus his energy on moving forward 

- that there’s very little you can do with CF to “feel better” – but you CAN actively improve and prolong your life despite discomfort 

- that as a young man he did a lot to either minimize and live in denial over his diagnosis 

- that the moment he began to engage with his disease, his world completely changed and he began to grow 

- that he loves being a patient advocate – and feels better when he works “on” his disease, meeting others who know what it’s like and engaging with community 

- that advocacy has enabled him to better understand life in general 

- that his family has supported him practically, but it’s been Thomas’ responsibility to engage with others in the community and find those who understand his experience 

- why it’s important not only to engage with patients in your own community – but also to engage outside of it 

- why he doesn’t believe in “tokenism” as a patient advocate, and why patient advocates should be compensated for their work – because volunteerism is, ultimately, exploitative 

- that patients aren’t more important than anyone else in the process of clinical trial/treatment design – but the idea that they are any less important is laughable 

- that his Dad is a GP, and this has helped him understand the patient-doctor relationship on a deeper level – he can see behind the curtain 

- that advocacy has helped him so much emotionally, and taught him how to advocate for himself – which has likely improved his health in general, and the level of care he’s received 

- that he is a trustee at Mind, a mental health charity in the UK 

- that he has had three failed assessments for lung transplant thus far – but no transplant as of yet 

- that there is a mandatory psychological assessment that goes along with the lung transplant assessment through the NHS, and as part of that process Thomas began seeing a clinical psychologist specializing in CF – and continues to regularly, to this day, for his overall health and wellbeing 

- the importance of closing the wage-gap among millennials, and how work-life balance cannot be achieved given the current state of the world economy 

- that commitment and consistency can change your life – whether you’re living with chronic illness/rare disease, or not 

- how nourishing community can be in the chronic illness world 

- the importance of acknowledging and owning your situation if you’ve been diagnosed with chronic illness 

Jaelin Palmer is a 25-year-old activist and organizer living with CRPS (complex regional pain syndrome, or reflex sympathetic dystrophy) and TN (trigeminal neuralgia). She was diagnosed with CRPS at 15, following a jaw surgery gone wrong; the TN diagnosis came much later, despite her extreme chronic facial pain. Her mother, Natalie, joins us in this special mother-daughter interview not only because she is Jaelin’s full-time caregiver, but also because we so value her perspective as the loved one of someone living with chronic invisible illness. Both women have gained and lost so much in the experience of living with and striving through chronic illness, and have a wealth of knowledge to share. Jaelin is a happy, social individual, committed to a number of causes – but chief in her interests is LGBTQIA inclusion and awareness (she and her sister McKenna founded the Yucaipa Rainbow Coalition), as well as chronic illness activism (especially with groups like Fight Like A Warrior). In their journeys, mother and daughter have learned what it means to be an advocate – both for oneself and for others – and sat down with Lauren to enlighten listeners with their message of hope, love, and strength. 

Tune in as Jaelin & Natalie share… 

- that Jaelin had jaw surgery to fix an underbite – and it was this surgery that caused her TN and CRPS 

- Jaelin’s ambition to succeed and to learn: that she was in too much pain to finish high school, and had to transition quickly to home schooling in order to get her diploma 

- that both Jaelin and Natalie experienced medical trauma in having to explain Jaelin’s pain and constantly relive her story in the early days of her diagnosis and treatment – but they’ve learned how to better communicate with doctors since then 

- that at one stage in the process of diagnosis, one doctor made the outrageous recommendation that Jaelin (then 16 years old) lose weight to calm her jaw pain 

- that there are 50 million people in the US living with autoimmune disease – more than with cancer and heart disease combined 

- one of the main reasons autoimmune disease research is misunderstood and underfunded (and patients are often first referred to psychiatric care) – because the majority of people living with these illnesses are women 

- Jaelin’s acknowledgement that Natalie was “ferocious” in the push for her care 

- that Jaelin graduated magna cum laude from college, and would like to go to law school – but is limited by her illness 

- that pursuing healthcare with chronic illness is a full-time job 

- Natalie’s recommendation that adults teach their kids the process of participation in one’s health and insurance needs 

- the discovery that Jaelin’s jaw surgeon had knowingly damaged nerves in surgery – which left her with lifelong chronic pain – and she was beyond the statute of limitations to sue for malpractice 

- that Jaelin had a second surgery to improve her comfort levels 

- that Jaelin weaned herself from opioids as much as she could during a fellowship in Washington, DC 

- the importance of registering with university disability offices to take advantage of opportunities to reschedule tests, etc – which are a student right 

- why Jaelin is upfront in communication with professors and other figures of authority in her life 

- why CRPS and TN are both nicknamed “the suicide disease” – because both rank in pain above childbirth, and roughly 25% of patients take their lives because of the pain 

- that Jaelin had her gallbladder out, but didn’t even notice the pain because as it compared to her facial pain…the gallbladder was barely a blip 

- that Jaelin lives through moments of doubt, questioning her sanity AND her identity because of her chronic pain 

- that Jaelin has Type 2 TN on both sides of her face, and as such is not a candidate for microvascular decompression surgery 

- that Jaelin is currently seeking treatment with doctors at UCLA and at the Mayo Clinic 

- that Jaelin helped plan LA’s inaugural Autoimmune Walk, along with Barbara and Haley Ramm 

- that the first thing Jaelin does every day is check in with her online community 

- that Jaelin struggles to make ends meet because of her disabilities 

- tip tops not only for patients, but also for caregivers and loved ones of individuals living with chronic illness 

Dr. Rashmi Mullur is an integrative endocrinologist leading practices at UCLA and the VA in Los Angeles. She received her medical degree from University of Texas Southwestern Medical Center, and completed her internal medicine and chief residency at Barnes-Jewish Hospital/Washington University School of Medicine, St. Louis. After this, she completed a fellowship in Endocrinology at the VA-Cedars Sinai Medical Center. A certified yoga instructor registered with the International Alliance for Yoga Therapists (IAYT), she is also a board-certified integrative medicine practitioner (American Board of Integrative Medicine), in addition to completing a research and medicine education fellowship. Dr. Mullur is also part of the David Geffen School of Medicine at UCLA curricular faculty, and chairs a course in endocrinology for first-year medical students, as well as leading the UCLA Health Integrative Medicine Collaborative as its education director. Her goal is to educate up-and-coming doctors in integrative medicine as they enter their training, with a focus on experiential learning. She has pioneered several clinical programs using integrative medicine techniques for the management of chronic disease, and she is recognized as a national leader on the use of integrative medicine for patients with diabetes. Given her background, the focus of her practice is in fully integrating Eastern and Western approaches to clinical care, using teachings from yoga, TCM, Ayurveda, and other modalities to truly connect mind and body in the treatment of endocrine disorders such as diabetes, thyroid disorders, stress management, and fatigue – often referring to acupuncturists, movement specialists, and other practitioners to complement her work. As a patient, Lauren can attest to the effectiveness of Dr. Mullur’s approach. One stunning fact: she takes a longitudinal history of each new patient, and has tailored her schedule to spend as much time with them as they need for appropriate treatment. So, basically: the needle in the proverbial healthcare haystack, and Lauren’s medical hero. 

Listen in as Dr. Mullur shares… 

- that she most often deals with patients who live with chronic stress and fatigue 

- that she is a special needs parent, and that juggling work, life, and care-giving can be exhausting – so she has to find the space personally to deal with those challenges 

- that her own experiences have given her a better understanding of what her patients are feeling, which has strengthened her empathy 

- that while many of her patients live with disorders that aren’t validated by lab testing, that doesn’t mean they don’t require care 

- an overview of the endocrine system, which is the focus of her work 

- that she takes a longitudinal bio-psychosocial history of all her patients – and why that’s important 

- her role: to bring her patients back to their own wellness 

- that she started utilizing integrative medicine in her practice in 2011 

- why “adrenal fatigue” isn’t an accurate diagnosis 

- what makes a good doctor: curiosity 

- an issue with the US healthcare system: that doctors are strapped for time with their patients 

- that the VA in Los Angeles has been responsive to alternative and complementary approaches to medicine (such as yoga, Tai Chi, and acupuncture) 

- how the VA has been advanced in its approach to helping veterans wean themselves from opioids, where addiction has become an issue 

- how the VA has also led the charge with regard to telemedicine, and why she’s excited to be a part of its growing program 

- the challenge of encouraging patients to find balance 

- why she turns to her yoga training in her integrative approach to care 

- that some patients have been ill for so long, they can’t hear what their bodies are trying to tell them 

- that so much of suffering (from misunderstanding) – for both patients AND physicians – is based in ego 

- that as a practitioner, she sees herself and patients in partnership over their care 

- what’s shifting in medicine: doctors’ comfort with saying “I don’t know” 

- that a lot of physicians deal with the same symptoms as patients: stress and fatigue associated with “burnout” 

- the advantages and disadvantages of group intervention in medicine 

- where physicians can improve in their approach to treating pain – in referring to PT, acupuncture, etc. 

- the problem with hormone testing: that hormones are only a snapshot in time, and are constantly shifting – which makes the nuances harder to track 

- that treating fatigue with hormones can often be like using a sledgehammer to knock on a door – it is often far too aggressive 

- that Deepak Chopra is also AN ENDOCRINOLOGIST!!!! (This fact blew Lauren’s mind!) 

- that we need to start speaking the language of energy medicine in traditional Western approaches to care – and that she thinks this will be the next advancement in medicine 

- that she’s working on a book right now – all about coping with stress and fatigue (check here for updates!) 

- the importance of patient empowerment – which goes beyond the concept of “patient-centric” care 

- her role as an advocate in her children’s care – especially in the care of her special-needs son 

- the power of social media to connect patients and caregivers 

- how elimination diets should work: for a short period of time, with professional supervision, and with the plan to reintroduce “no” foods in the future 

- that she sees a lot of orthorexia in her practice – especially among younger female patients with diabetes, who are also often at risk of micronutrient deficiencies 

- why it’s important for patients to document their symptoms for their doctors 

Anisha Gangotra is an inclusive dance instructor living in the UK, and the sister of former guest Trishna Bharadia. In 2008, at the age of 24, she was diagnosed with ulcerative colitis (UC) – an autoimmune condition that attacks the gut. Shortly after, in 2011, she was a victim in a high-speed car accident; during her long recovery and rehabilitation, she was additionally diagnosed with PTSD, depression, and anxiety. For the next 4-5 years, she sought to access mental health treatments such as CBT (cognitive behavioral therapy), EMDR (eye movement desensitization and reprocessing, covered in Episode 11 with Michele Sherman MFT), and others – but in some cases, it took years for her to receive proper access to these treatments. In a total career shift inspired by her own experience, she also began working full-time to support people with mental health issues in the workplace – be they seeking work, navigating discrimination, or considering leaves of absence. In 2015, she began to teach inclusive dance classes – designed for people with disabilities/long term conditions, as well as for those without – partly for her own mental and physical health, but also to provide a safe space for others with similar conditions to rediscover freedom and joy in their bodies – in a safe space. 

Tune in as Anisha shares… 

- that colitis (including UC) is under the same umbrella as Crohn’s – the inflammatory bowel diseases (IBD) 

- that she first detected the potential for UC when she passed blood in her stool 

- that her diagnosis was not straightforward 

- that UC consists of flares and periods of remission, much like many other autoimmune diseases 

- about the period of onset, during which she questioned her own sanity 

- the relief of receiving a diagnosis 

- that her first colonoscopy was administered without sedation – or explanation 

- that she now has a medical team she truly trusts – even though she has to travel quite far to reach them 

- the importance of connecting to a chronic illness community 

- her road to recovery post-car-accident: not just physically, but mentally 

- how she discovered she was living with PTSD – she began to jump at loud noises, or feel triggered at the smell of smoke, crushing metal (cans), etc 

- her journey through therapies to treat her PTSD – she started with CBT (two rounds), but found EMDR to be most effective 

- that CBT gave her behavioral techniques to cope with triggers, but EMDR helped to remove the triggers entirely 

- a description of how EMDR works to engage both sides of the brain, allowing it to get “unstuck” 

- that she lived with her PTSD symptoms for 4 years before she found EMDR – and she believed, the entire time, that she wouldn’t have to continue to live her life in fear 

- that she was also diagnosed with anxiety and depression associated with her PTSD – all of which emerged after her car accident 

- that she decided something good must be able to come out of her adverse experiences – and so she changed careers and began to work in the mental health field, assisting those afflicted with employment concerns 

- that she sees her experience as a major strength in her job 

- that she discovered Zumba as part of her recovery, and fell in love with it – specifically because it wasn’t about getting it “right”, but about enjoying it 

- how teaching inclusive dance inspires her 

- the role her family has played in her ongoing care 

- that healing is not linear, and she still has dips in her mood from time to time – and that this is OK 

- that the responsibility of teaching her class and showing up for her students has helped her work through her moods and been key in her healing 

- a study of her resilience – and an acknowledgement of her strength 

- how she practices self care and manages her symptoms – and lives a full life 

- the importance of doing one’s own research as a patient, and seeking targeted treatment by becoming engaged in one’s care 

- the importance of travel to expand her perspective – despite its challenges to her health 

Phoebe Lapine is a food and health writer, gluten-free chef, culinary instructor, recipe developer, wellness blogger, Hashimoto's advocate and speaker, and the voice behind the award-winning blog Feed Me Phoebe. Named by Women’s Health Magazine as the top nutrition read of 2017, Phoebe’s debut memoir, The Wellness Project, chronicles her journey with the autoimmune disease, Hashimoto’s thyroiditis. She is the host of the SIBO Made Simple podcast and author of the new book by the same name which helps those newly diagnosed or chronically fighting small intestinal bacterial overgrowth. Phoebe’s work has appeared in Food & Wine, Marie Claire, SELF, Glamour, Cosmopolitan and Mind Body Green, who named her one of 100 Women to Watch in Wellness. She was born and raised in NYC — where she continues to live and eat.

Tune in as Phoebe shares:

• how she was first diagnosed with Hashimoto’s thyroiditis
• how her health has impacted her relationship with food
• how much work it takes to be well, especially when one is impacted by chronic illness
• what SIBO is, and how she was diagnosed
• how the symptoms of SIBO can manifest in the body
• about the state of SIBO research and clinical practice
• what it was like to humble herself with her own advice after writing The Wellness Project
• how big a role stress can play as a root cause in chronic illness
• about the close correlation between IBS, SIBO, and autoimmune disease
• what a low-FODMAP diet is all about
• how she accesses and optimizes her own wellness
• what she thinks the next frontier of gut health will be

Devri Velazquez – or, as she has aptly proclaimed herself, “pretty, sick. chick” – is a content creator, writer, editor, speaker, model, and advocate for chronic illness. She lives with a very rare form of vasculitis called Takayasu’s Arteritis. Diagnosed in 2011, she was told by doctors that she might not live to see 30 – and she turned 30 last month! Not only has she defied the odds with her physical health, but her mental health has played a big role in her ongoing wellness and healing. Since diagnosis, she has worked tirelessly to advocate for awareness of this rare disease, connecting with individuals all over the world living with similar conditions. She sat down with Lauren to talk about what motivates her, how she approaches her mindset, and why hard boundaries in her relationships have kept her in good stead. We also touch on gender, ethnicity, and sexual identity as they apply to her medical experience. 

Tune in as Devri shares… 

- that she was diagnosed during in her last semester of her undergrad degree 

- that her early symptoms included brief vision loss, rapid weight loss, jaundice, limp joints, hair loss, and heart palpitations 

- that it was confusing to connect the dots of her symptoms – and that at the time she felt like an outsider looking in on her body, disconnected from it entirely 

- the revelation that caused her to look into her health more deeply: her mom, a nurse, urged her to go to the hospital 

- that it was lucky her parents knew people at the local hospital – because those connections got her a diagnosis within days of checking things out 

- that she saw how hard people rallied around her to find an answer 

- that she was so sick at diagnosis, she worried she’d die in her sleep 

- that she was on bed rest for a full year after diagnosis – which is the antithesis of her personality 

- that her partner helped take care of her that first year after diagnosis, which really humbled her 

- the importance of asking for help – it’s OK, and it’s necessary 

- that as intense as her physical symptoms were, the mental battles that she faced were harder 

- some background about Takayasu’s Arteritis 

- that the biggest registry for Takayasu’s is in Japan, and consists of about 1,300 patients 

- that 1 in 2-3 million people may be at risk for Takayasu’s – so, in essence, she is the only person in Brooklyn living with it 

- that she had to get her mind around the idea of death, and come to terms with it 

- that she has created discipline around her diet, rest, and relationships 

- that when she was diagnosed in her early 20s, medical professionals told her family that the low life expectancy with Takayasu’s meant she had a 40% chance to live 10 more years – and she just turned 30 

- that she lives in a constant 8 or 9 on the pain scale, but has learned to accept that level as her 2 or 3 

- that she’s learned grace from her experience with chronic pain 

- that her pain is focused mainly in her joints, and she occasionally uses a cane as a mobility aid 

- that as a freelancer, she is unable to consistently maintain health insurance 

- that she takes great inspiration from the world around her 

- that she feels more pain when she stands still – which is both a reality and a metaphor for her life 

- the role of mindset in her health 

- that she would like everyone to have access to healthcare 

- that artists and creatives aren’t taken as seriously as others in the healthcare space, and they need to be 

- the need for greater compassion in politics and in healthcare 

- the burden of her healthcare costs, which make her feel like her chronic illness is a punishment 

- her experiences of judgment, harassment, and abuse in the healthcare system as a queer WOC with chronic illness 

- how the #MeToo movement has taught her to raise her voice in uncomfortable medical situations 

- that she shares her story to remind others they are not alone 

- that she experienced her first bout of depression at 13, and has had support from her family since the beginning 

- that she utilizes therapy for her mental health, and that she started her own meditation practice at the age of 12 

Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University. 

Tune in as Chris shares: 

- how he got involved in ME/CFS research 

- his main area of expertise: metabolomics 

- that ME/CFS outbreaks can be traced back as far as the mid-19th C, with symptoms  commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function 

- a description of PEM – post-exertional malaise – which is the main component of ME/CFS 

- that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain 

- that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses 

- that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis” 

- that patients need to have ME/CFS for 6+ months in order to receive a diagnosis 

- one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset 

- that 1 in 200-300 people has ME/CFS 

- that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding 

- that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present 

- that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work 

- that the Open Medicine Foundation was built to provide effective treatments for ME/CFS patients 

- that meeting patients has inspired him in his work, even from the very beginning 

- the desperate need for funding for continued research into ME/CFS 

- the politics of funding medical research 

- that ME/CFS is often considered to be more a psychological than a physiological illness 

- that the National Institutes of Health (NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS 

- the biggest bright spot in ME/CFS: the momentum of funding for research 

- OMF’s collaborative research initiatives with Harvard, Stanford, and others 

- that ME/CFS could be a collection of several diseases, and not one disease in and of itself 

- the importance of specifics in diagnostics 

- why medicine needs to be patient-centered 

- the importance of pacing in order to avoid a crash related to PEM 

- info on OMF’s current fundraising initiative, #TripleTuesday – and how to donate to ME/CFS research and have your donation tripled by partners! 

Nitika Chopra is, in her own words, “a woman on a mission to inspire radical self-love.” Her goal is not only to show us how to fall in love with ourselves, but, like her, to “learn to thrive with a chronic illness.” If she’s one thing: she’s real. Nitika shares the raw pain she had to grow through in order to find that self-love she speaks so passionately about. Diagnosed with debilitating psoriasis at 10, she was further diagnosed with psoriatic arthritis – which at that point had taken over most of her body’s joints – at 19. She lived for years with unsightly sores from head to toe, unable to move without severe pain. She lived through, as she tells us in this episode, more than 15 years of pain, insecurity, confusion, and depression. In that darkness, she made a decision: “to be more committed to [her] happiness than [to her] suffering.” By 2010, she’d mastered the concepts of self-love and self-care and founded lifestyle magazine Bella Life; a few years later, her now-glowing skin came center-stage as she became the host of Naturally Beautiful, a talk show that aired on the holistic lifestyle channel Z Living. Most recently, she became a luxury skincare spokesperson and regular expert on QVC. She’s also the host of her own podcast, The Point of Pain, which explores how we can navigate pain in our lives – both literally and figuratively – with grace and heart. This week, she launches perhaps the most heart-centered of her projects to-date: the first annual Chronicon, in partnership with Healthline. For one day in New York City, she and numerous chronic illness advocates and experts will join panels (in an ADA-compliant space!) to talk about life with chronic illness: the good, the bad, and the ugly. She prides herself on being able to truthfully feel the fear – and do it anyway. And do it she does! We are so excited to hold space for this inspirational, real woman – who pulls no punches. Uninvisible Pod crew: meet Nitika! (P.S. We know you’re all wondering – and no, she’s not related to Deepak or Priyanka!) 

Tune in as Nitika reveals… 

- that she was 10 when she got her psoriasis diagnosis – following a sterile, cold experience being biopsied 

- that she was diagnosed with severe psoriatic arthritis at 19 

- that she still struggles with inflammation, which inspires self-love conversations with herself constantly 

- that she’s on AIP for her health 

- that just because she doesn’t have psoriasis all over her body, doesn’t mean she isn’t managing her symptoms daily 

- that she spent a lot of time beating herself up with what she calls “toxic positivity”, or the “pink bubble”, in the wellness space – that she followed the prevailing teaching that there was something misaligned in her perspective, and she had to fix it (and that, in essence, her ailments were her fault) 

- that she’s passionate about debunking “toxic positivity” 

- that her bones began to deform because of her arthritis 

- that she is a very spiritual person, and finally came to the conclusion that maybe God also made medicine to help cure her – not just to hurt her 

- her wake-up call to medicine: when she couldn’t make it to an audition, and realized that she wasn’t living a full life 

- that not everybody needs to take medication – but it really changed her life 

- that no amount of green juice would have saved her – she really required medicine 

- that in high school, she’d wake up with bloody sheets from the itching in her sleep 

- that her ex-husband made her feel that she could trust herself – that her gut was teaching her the right things, and she needed to listen to it 

- that she has truly become her own advocate, even though she’s always considered her mom to be her nurse 

- that she’s been creating content for 10+ years now, but her health journey was never what she wanted to lead with 

- that she’s always been proud of what she’s overcome and been through – but she didn’t want that journey to define her life 

- that in 2016, work began to dry up – and by the end of 2017, she had connected to her larger purpose: and realized it was time to talk about the one thing that moves her in a way that nothing else does – her health journey. As such, the world began opening up to her again 

- that when she meets someone who’s struggling with their body in ways that she can relate to, nothing moves her more than being able to help that person 

- how CurvyCon inspired her 

- that Chronicon feels like a place that she’s creating for a LOT of people to finally belong 

- how she creates balance in her life – and that she doesn’t manage everything perfectly, but she’s always learning 

- how she practices self-love and self-care 

- that she’s experienced more adversity as a woman in the medical system than as a woman of color 

- that getting divorced was less isolating than being chronically ill 

- that she started Chronicon in part to end the shame and isolation associated with chronic illness 

- the American Health Council’s projection: that by 2020, 157 million people will have a chronic illness 

- that she’s learning so much from attendees and panelists at Chronicon 

Clare Stafford is one of Lauren’s oldest friends. Hailing from Melbourne, Australia (by way of Irish-born parents), Clare has built a career as a social justice advocate and lawyer. Having worked in refugee camps in Greece and campaigned for indigenous rights in Australia, her focus has always been on immigration, native rights, gender equality, and climate justice. She is an avid follower of music, traveling the globe to attend festivals and visit friends far and wide. In 2017, shortly after turning 33 years old and subsequently losing her mother to lung cancer, Clare herself was diagnosed with cancer in her left breast. She has now survived this cancer twice, and has been told by her Western medical team that a third occurrence would mean she’d be treated as terminal. When she discovered integrative medicine, her doctors laughed (in a good way!) at these claims. She sat down with Lauren in July 2019 to discuss her recent trip to an integrative medicine center run by Cuban doctors in Colombia (Instituto Medico Cubano) – and how the holistic treatments she received there have changed her perspective on cancer – and on chronic illness. 

Tune in as Clare shares… 

- that she knew something was wrong 18 months prior to being diagnosed with estrogen-positive breast cancer – and had ECGs that showed nothing was wrong despite pain near her heart 

- that she finally put her foot down and was given an ultrasound, which showed two tumors right in the area where she had been experiencing pain 

- the interesting connection between the brain and our experience of pain – because Clare’s tumor was not of a kind that typically causes pain, and yet the alarm systems in her body were somehow alerted that something wasn’t right 

- her perspective change: that cancer is not a death sentence, but a chronic illness – and she will continue to manage its symptoms for the rest of her life 

- that she was originally told she wouldn’t need chemo or radiation 

- her process of discovery: ultrasound, followed by two lumpectomies, and a mastectomy on the left side – though she opted to have both breasts removed and reconstructed (28% of it coming back on the right side) 

- that there was not much medical follow-up after her surgery 

- that she lived the “bad luck broken record” for a while – she kept getting infections and ending up back in hospital after her double mastectomy 

- that she started having abdominal pains and was continually turned away – and it turned out, following laparoscopy to make the determination, the cancer drug she’d been on had likely given her endometriosis 

- that 12 months to the day from her double mastectomy, she was diagnosed again with breast cancer 

- that she endured 3 months of chemotherapy (2 types), and maximum radiation for 5 weeks 

- that she is now on injectable cancer drugs that push her body into medically-induced menopause, as well as an aromatase inhibitor (i.e., stops the production of estrogen in post-menopausal women) 

- that she froze her eggs before chemo and radiation – and this procedure was offered to her at no cost, without insurance, through the Australian medical system 

- that she experimented with diet and Chinese herbs while being treated for her first cancer diagnosis 

- that after her second cancer and endometriosis diagnoses, she began to explore integrative medicine and found NIIM 

- that during chemo and radiation, she used scalp cooling to keep (most of!) her hair 

- that she used integrative treatments to complement her chemo and radiation 

- that her friends and family threw her a party – The Big C – to raise money for her treatment at NIIM, as well as abroad 

- the reasons she chose to travel to Colombia for additional integrative treatment following chemo and radiation 

- some of the treatments she went through at Instituto Medico Cubano – including vitamin drips, hyperbaric oxygen, immunotherapy (targeted therapy), and regressive therapy 

- that her integrative medicine doctor’s third question to her upon arrival in Colombia was: “What is your relationship with your mother?” – and she posits there is a direct connection between Clare’s cancer diagnosis and her mother’s passing 

- a discussion of Dr. Hamer’s findings on chronic illness and disease 

- that she realized after her stay in Cali that she hadn’t looked down the barrel of her trauma – and that this was the next step in her healing work 

- that she had full genomic mapping done in Cali – which will show her predispositions to pathological response to certain treatments and medications, among other things 

- that she’s found a renewed interest in meditation, and was recently introduced to Dr. Joe Dispenza’s work 

- why she is her own advocate 

Ilana Jacqueline is a best-selling author, speaker, patient advocacy strategist, and professional patient advocate. While her background is in PR, her career as a patient advocate started with an early blog, Let’s Feel Better, in 2012, and gave birth to the book Surviving and Thriving with an Invisible Chronic Illness – which was Lauren’s playbook when she first got diagnosed (Ilana has a way of saying it like it is and managing to stay sane and amused that is right up Lauren’s alley). She has a longstanding relationship with Global Genes, where she served as the managing editor of The RARE Daily for five years. She was later appointed the Manager of Patient Advocacy at FDNA, where she developed the Genomics Collaborative program. Most recently, she has joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit), and IDA (Invisible Disabilities Association), while also working at WEGO Health and continuing her regular column in IG Living. She has a long career of freelance writing, and has contributed to publications including The Huffington Post, Marie Claire, Everyday Health, Mashable, and The Miami Herald, among others. She speaks at medical, patient, and pharma conferences as well as consulting with companies on how the patient voice can improve the design of healthcare. 

Tune in as Ilana shares… 

- all about Surviving and Thriving with an Invisible Chronic Illness 

- about life with PIDD (Primary Immune Deficiency Disease) 

- that her family is more holistic when it comes to healing – but that holistic approaches haven’t been effective in managing all her symptoms 

- that she’s eager to try varied approaches to her healthcare 

- how difficult it was to be taken seriously by doctors 

- that she lives with constant gastrointestinal issues, nausea, etc. 

- what PIDD is: a lack of antibodies to prevent illness; and how to treat it: intravenous immunoglobulin therapy (IVIG) 

- that she is one of the very rare few living with PIDD who do not have a positive response to IVIG – so now, she treats infections as they come (high-dose/IV antibiotics, etc.) 

- that she has survived pneumonia, sepsis, and other serious conditions as a result of PIDD 

- that she is constantly proactive about her health, prevention, and care 

- how telecommuting has enabled her to have a career without endangering her body 

- the role that self-care and boundaries play in her life, both personally and professionally 

- confrontations with strangers – and the audacity of the uninformed 

- what it was like to have a visible element to her chronic illness (in the form of a central or PICC line) 

- the “rite of passage” of being judged for using the disabled spot in a parking lot – when you have a parking pass and live with disability, but look young and able 

- why she’s solution-focused and doesn’t wallow in sadness 

- her “curiosity cards” – business cards that called strangers out on staring, and provided answers through her blog 

- escaping uncomfortable situations without always engaging 

- why it’s not a disabled/chronically ill person’s responsibility to educate everyone – but why instructing the public on how to respond is useful 

- her co-morbidities, among them dysautonomia (the dysfunction of the autonomic nervous system) – and why hydration and fluids are so important to her health 

- how her mom has shown up as her advocate – and discovered her own diagnoses after Ilana did 

- how she’s learned to mitigate medical trauma 

- how her husband has taken on the role of advocate from the beginning of their relationship 

- what it’s like to be a patient advocate 

- her realizations about friendship with chronic illness – and that relationships are a two-way street 

- other chronic illness warriors she admires 

- how she was diagnosed with pelvic floor dysfunction 

- the thin line between empowerment and shame in the chronic illness world 

- the importance of finding a good therapist 

Aditi Juneja is a lawyer, writer, and organizer living with epilepsy. She is the creator and host of Self Care Sundays, a podcast about self-care for communities of color. With past guest T. Sydney Bergeron Mikus, she is also the co-founder of the Invisible Illnesses Support Circle at The Wing in NYC. While at NYU law school, she co-created the Disability Allied Law Students Association (DALSA). In 2017, she also cofounded the Resistance Manual, a nonpartisan organization crowdsourcing content on legislative and policy issues and offering it to the public at a basic reading level in order to make it accessible to all English speakers. This project was created in partnership with StayWoke; as part of it, she also co-created OurStates.org. In 2018, she was selected by Forbes as one of the 30 Under 30 in Law & Policy. She is currently the communications manager at Protect Democracy. In this interview, we talk about what it has been like to manage her seizure disorder throughout her early life and career, and how we can make healthcare more accessible. 

Listen in as Aditi shares… 

- how her mom discovered that she was having petit mal seizures when she was 3 years old – but didn’t share this news with her until she was older 

- that she had her first grand mal seizure in 2001 – shortly after 9/11 

- that she noticed triggers for her grand mal seizures – and realized the need for medication to dampen the triggers 

- that she has spent a lot of time adjusting her medications to stay on top of her symptoms 

- evidence of bias in the medical industry: that she was able to see specialists sooner because of networking connections 

- that she’s been seizure-free for four years now – and she hasn’t gone this long without a seizure since high school 

- that she ended up on a medication black-boxed by the FDA – meaning that it carries a high mortality or health risk rate – but that she’s been absolutely fine on it (and, as it happens, the odds of a negative reaction are low) 

- her attitude about her health and quality of life: “if you’re going to live a life, it should be worth living – and be the one you want” 

- that she hasn’t been injured during a seizure, but she knows plenty of people who have been 

-  that most epilepsy medications are downers – but she happens to be on one of the few uppers 

- that she has been diagnosed with idiopathic generalized epilepsy (like 1/3 of epilepsy survivors) – because her family history of epilepsy is scarce at best 

- that she has always been her own health advocate and been open to educating others about her condition – and her parents encouraged her in that direction 

- do’s and don’ts for helping folks having seizures: lay them on their side; if more than 2 minutes, call 911; move dangerous furniture; don’t restrain them; and don’t put anything in their mouths 

- that she has learned to tell teachers, employers, etc. about her condition early on – so they know how to handle a seizure if it happens 

- that she has an aura that warns her of an oncoming seizure, and she’s able to take the appropriate precautions 

- the importance of lifestyle choices and boundaries – especially when it comes to prioritizing sleep – in managing her symptoms 

- that she got involved in healthcare advocacy during the ACA repeal debates, and especially after the recent death of Jakelin Caal in CBP custody; she was also involved in the disability community in law school at NYU with the foundation of the Disability Allied Law Students Association (DALSA) 

- the importance of visibility as a disabled WOC 

- the disparities between mental health care and physical health care in the medical industry 

- why she uses PillPack 

- a recognition of her privilege 

- why it’s OK to speak about your disability – and also NOT to speak about it 

- the importance of being intentional when creating spaces for open discussion 

In this second installment of Lauren’s interview with Ariel, we dig further into his conditions and lifestyle: what his advocacy work means to him, his journey through the workforce and struggle to find employment with disabilities, his experience as a service dog handler, and life with thyroid disease, bipolar II, borderline personality disorder, endometriosis as a gender-diverse individual, and chronic pain. He emphasizes that these experiences are not unique to him – but that he is privileged to share his unique experience. (Again – if you hear dogs barking in this one, it’s just Caliban’s buddy Blue giving us a shout-out!) 

Join us as Ariel shares… 

- what a typical day is like for him 

- that he struggles with agoraphobia 

- his need to connect with nature 

- what it’s like to lean on others as a Spoonie 

- that weather changes can trigger his symptoms, and force him to focus his work inward rather than outward 

- the expansion of his advocacy work 

- his background as a college instructor, why he loves academics, and how his work as an educator influences his advocacy work 

- what his advocacy work means to him 

- how poorly our working world is designed for us – and the lack of accommodations and opportunities available, especially for disabled individuals 

- factions within the disability community – and how the disability community is, however, also one of the most polite out there 

- an examination of his childhood development, and how it has influenced who he is today 

- his experience of discrimination when out in public with his service dog, Caliban 

- that he used to use mobility aids full-time – and now his disability markers are far less visible 

- that he lives with additional diagnoses, but chooses not to discuss them because there are already great advocates for those conditions 

- his advice for other Spoonies or individuals confronting gender identity issues 

- the importance of finding community 

- the importance of his changed relationship to food – from dysphoria to nourishment 

If you’re involved in the Spoonie community on Instagram, you’ve probably come across Ariel of @carpe_that__diem, who blogs about living in a disabled trans agender body, mental health, working with a SD (service dog), and death positivity. An academic by training and trade, Ariel’s perspective is eloquent, enlightening, and engaging. He uses this interview (in two parts) to dive into the intersections of invisibility in his life – as a disabled person living with post-hysterectomy endometriosis, Hashimoto’s disease, and a Cluster B personality disorder; as well as both inner and outer perception of his gender identity, and how his medical conditions have interfered with his self-realization. A complex and candid interview, Ariel paints pictures of frustration – and triumph – in his survival story. (And a heads-up that if you hear any barking in the background – those are Ariel’s pups saying hello!) 

Tune in as Ariel shares… 

- his experience of disability, invisibility, and gender 

- that he had a pediatric diagnosis of hypothyroidism and Hashimoto’s disease 

- that his doctors and parents advocated for him from a very young age 

- this his body chemistry shifts constantly, and he has had to constantly adjust his thyroid medications reactively 

- that he originally wanted a hysterectomy as the first step of bottom surgery for gender affirmation – but it became a priority because of chronic pain associated with endometriosis 

- that he lacked support from his peers as he developed – and was openly judged for his early development by both peers and adults 

- that he lived in undue suffering for years – not realizing that his menstrual pain was abnormal 

-  that he struggled with the emotional AND physical process of coming to terms with his own gender identity, which was compounded by gynecological pain 

- the Da Vinci robotic method for hysterectomy – and how his surgery was single-incision through his belly-button 

- that the results of his initial tests (pre-hysterectomy) had been misinterpreted; as a result, recovery was devastating – and there is now a very real risk that there may still be active endometrium continuing to grow in his body. As such, he has to keep on top of that with future imaging and surgeries 

- that removal of the cervix only is not typical of gender-affirmation surgery 

- that the immediate recommendation post-hysterectomy was a full vaginectomy, which he may still have to do 

- that because of these surgical complications, his gender affirmation is in limbo – he must keep a female gender marker in order to continue to properly treat his endometriosis through health insurance – ultimately, his body is still interfering with his gender identity 

- the common misconception that a hysterectomy is a “cure” for endometriosis – which it isn’t. It is only a treatment, not necessarily a cure 

- that he still lives with chronic pain due to the persistence of endometriosis, as well as cramps and bloating 

- that he also lives with borderline/bipolar 2/Cluster B personality disorder – and that this disorder has largely been misunderstood because of its presentation in media 

- that borderline personality disorder is really scary for the person who lives with it – he feels he lives with a monster 

- that the medical community has not yet come to a conclusion as to the cause of Cluster B personality disorder – whether it is hereditary, trauma-related, or otherwise 

- how a Cluster B personality disorder manifests – and what “splitting” looks like 

- that Cluster B personality disorders are notoriously medication-resistant 

- that he treats his mental health disorders with CBT (cognitive behavioral therapy), DBT (dialectical behavioral therapy – blunt de-escalation strategies that address negative feelings), and various medications 

- that his partner has been an incredible support across the board – but that he also presents as cis-gender male, and tends to be taken more seriously than Ariel in many situations, particularly medical – because of “the enormity of his masculinity” 

- that his service dog, Caliban, gave him back a life outside of the house – and in the world 

- what it means to be transgender, and how he has undertaken his transition 

- that he considers himself agender – which is part of the non-binary spectrum 

- that being agender means he can make a self-determination about what masculinity and femininity means to him 

- that he has tried using gender-neutral pronouns before – but it was an uphill battle to argue the use of they/them (despite its existence in language as a whole) – so he started using “he/his” instead – not because he disagrees with the use of gender-neutral language, but because with everything else on his plate, he wasn’t willing to die on that hill to prove his point – or to legitimize his existence 

- that even Marsha P. Johnson lived with multiple disabilities and mental illness – and her calling card was “I may be crazy, but that don’t make me wrong” 

- the medical prejudice that queer-identifying individuals still come across on a daily basis 

- TRANSCARE from the University of Iowa – and how everybody in the medical world has to get comfortable communicating effectively with their patients in order to create an affirming and safe environment 

Rachel  Hill is an author, writer, thyroid patient advocate, and creator of the award-winning website, The Invisible Hypothyroidism. Diagnosed with hypothyroidism and Hashimoto’s disease, she talks openly and honestly about what it’s like to have these diagnoses, as well as what has helped her and many others to recover their health and to thrive. She is passionate about helping those with hypothyroidism and giving them a voice, and is recognized as a valuable contributor to the thyroid community. 

Listen in as Rachel shares… 

- how she was first diagnosed with hypothyroidism as a teenager 

- that before her diagnosis with Hashimoto’s (at 21), she had two severe flus, as well as symptoms that included uncontrolled loss of weight, migraines, irregular periods, acne, acid reflux, bloating, contact dermatitis, eczema, and the loss of about 80% of her hair 

- how common thyroid disease is – and how few of us are talking about it 

- that her symptoms left her bed-bound and immobile many days, and forced her to reduce her work commitments 

- that she was originally prescribed T4 (Synthroid/levothyroxine) only, and this didn’t’ help – but she started researching alternate options and found a thyroid community 

- that based on her research, she decided she wanted to try NDT (natural desiccated thyroid), which she had to self-source because no doctors in the NHS would prescribe it 

- that not only has she struggled to get doctors to believe her, but many of the fellow thyroid patients she hears from have been in the same boat (including Lauren) 

- the emotional toll of not being believed as a patient 

- the importance of becoming an active participant in your own healthcare – in other words, becoming your own advocate 

- how risky self-sourcing medications can be 

- how important it is to always keep your doctors in the loop with regard to medications and treatments 

- the best tests for thyroid function, and what they teach us: TSH, free T3, free T4, thyroid peroxidase antibodies (TPO), thyroglobulin antibodies (TgAb), and reverse T3 (which can often be the most difficult to obtain) 

- why TSH isn’t enough of a test on its own in order to fully understand our thyroid function 

- that Hashimoto’s and hypothyroidism are not mutually exclusive diagnoses 

- that her husband, Adam, has acted as an advocate for her in medical settings 

- that, disappointing as it may sound, female patients often find they are taken more seriously by doctors when they bring a male advocate with them to their appointments 

- that her husband’s advocacy has brought them closer together – so much so that they have now written a book together! 

- that her husband truly understood what she was experiencing when she explained Spoon Theory to him 

- that fatigue and brain fog always troubled her when she was sick, and made her worry that she might have early-onset dementia 

- that she now avoids gluten; when she does accidentally consume it, she can be knocked down for a few days 

- the importance of making your workplace as comfortable and accommodating as possible for your needs when you have chronic illness 

- the importance of conserving energy, even in small ways, when you live with chronic illness 

- how her book, Be Your Own Thyroid Advocate, was designed to help thyroid patients – and was born from her blog, The Invisible Hypothyroidism 

- info about her newest book with hubby Adam: You, Me, & Hypothyroidism, which charts both patient and loved-one POVs on navigating chronic illness 

- how she started her award-winning blog 

- that while the NHS is wonderful, it has let Rachel down as a thyroid patient – she wasn’t tested for hypothyroidism until she’d had symptoms for 4+ years 

- how common thyroid disease is – 1 in 20 in the UK live with it, but as much as 60% of cases are undiagnosed 

- the fact that although so many people likely have thyroid disease, it’s not commonly screened in the UK 

- that UK doctors are forced to jump through additional hoops to screen and medicate thyroid disorders 

- the importance of power in numbers to create change 

Todd White is the founder of Dry Farm Wines, and is a leading authority on healthy organic/natural wines and the importance of micro-dosing alcohol for health, longevity, and vitality. His passion is in unlocking the best way to enjoy alcohol – how to enjoy the benefits of moderate consumption while avoiding its potential negative side effects. Dry Farm Wines was born from Todd’s interest in biohacking and his role as a health evangelist; the company has been endorsed by many leading US health influencers, including Mark Sisson (Primal Blueprint), Dave Asprey (Bulletproof), Chris Kresser, and Dr. Mark Hyman, among others. Dry Farm Wines is the only lab-tested, all-natural, health-quantified wine merchant in the world; Lauren discovered them thanks to former guests Becca Murray and Liz Beebe (Ep 6), who touted the fact that every wine sold is held to incredibly high standards, and safer for some of us with chronic illness to consume because they are sugar-free (ycotoxin/mold-free, dry-farmed, additive-free, gluten-free, naturally or biodynamically farmed, and safe to consume for those following the Keto or Paleo diets, among others. Todd has a lot to share about the wine industry that we DON’T know – prepare to have your minds expanded! TW: alcohol consumption/addiction. 

Join us as Todd shares… 

- that alcohol is a dangerous neurotoxin and drug – and therefore needs to be consumed responsibly and in moderation 

- that he has always loved wine, but found it was producing negative side effects when he imbibed – and wanted to find a way to drink wine that wouldn’t produce these effects 

- that he started to suspect that drinking less alcohol (alcohol percentage under 12.5%) would control some of the negative side effects 

- that wine labeling is controlled by distributors and manufacturers, who have lobbied to keep facts from consumers: including up to 76 additives APPROVED by the FDA – so essentially, consumers don’t know what is – or is not – in any bottle of wine they purchase 

- that Dry Farm Wines is the only merchant that independently lab-tests the contents of the wines they sell 

- that the TTB (Tax & Trade Bureau) is responsible for labeling alcohol – and these labels can legally be inaccurate because of variances built into laws written in the 1940s (read: collusion between the wine industry and the US government) 

- that most wine produced in the US is made by only three wine conglomerates – hiding behind of thousands of labels 

- that higher amounts of alcohol combined with sugar can cause negative side effects 

- that Dry Farm Wines rejects 70% of the wines that they taste and test – because they do not meet strict criteria 

- the difference between drinking to check out – or to tap in 

- that the difference between 11% and 15% alcohol is radical – your body is likely to react in very different ways 

- that the term “natural wine” has no certification program – there’s no legal definition for it, but there’s a general understanding in the wine industry – and in the case of Dry Farm Wines, it’s dry farmed, and either organically or biodynamically farmed 

- the science of wine production – and the importance of the strict criteria Dry Farm Wines uses to distinguish the wines they sell from others on the market 

- why Dry Farm Wines only carries wines from Europe and South Africa – none from the US 

-  where you can find natural wines in stores: NYC, LA, San Francisco, Chicago, and Dallas – but harder to source elsewhere 

- that the only way to change the system is to elect different people with the ideals we believe in 

- that the “organic”  or “biodynamic” label does not mean a wine is additive- or sugar-free – and while it’s better to drink than conventionally-farmed wine, it is still not necessarily the healthiest choice 

Nikita Williams is a mindset business coach and the host of the podcast, She’s Crafted to Thrive. She was diagnosed with endometriosis in 2009 and fibromyalgia in 2010. These diagnoses inspired her to use the training she received from previous jobs to jump-start her career as a business coach. Nikita learned that having a chronic illness did not limit her potential. In fact, it helped her to see the possibilities for herself and for her clients. Her aim is to help all creative women — especially those who live with chronic illness — to go from feeling limited to limitless so that they can create a life and business that thrives, in their unique way.

Tune in as Nikita shares:

• that she first noticed debilitating pain on her honeymoon, but noticed irregularities in her cycle from its appearance at the age of 15
• the learning curve of “not knowing what you don’t know”
• that she’s been additionally diagnosed with PCOS (polycystic ovarian syndrome), adenomyosis, IC (interstitial cystitis), and vestibulitis (which she now has as a result of medical trauma caused by a healthcare provider)
• why she decided to take a year off all medications
• that she has never been offered mental health support for her conditions
• how she discovered she was a highly sensitive person (HSP)
• why she only sees female doctors
• how seeing a urogynecologist was a life-changing experience for her
• why self-advocacy is so vitally important
• why finding a way to cope with her pain has always been her first priority — and yes, even before the question of her fertility
• that the depth of her chronic pain and surgical intervention forced her to face her mortality
• how essential oils and EFT (Emotional Freedom Technique) have helped her manage her pain and anxiety
• why her hysterectomy triggered depression and anxiety
• how sharing about her chronic illnesses helped her find healing
• why she chooses to be intentional with her energy
• that in order to embrace your future, you have to face your past

Karyn Buxman is a neurohumorist (living at the intersection of the brain and humor), author, researcher, keynoter, coach, and TEDx speaker. For the last 30 years, she has worked with clients like NASA, the Mayo Clinic, Cigna, and 800+ others to empower with healthy humor. She runs custom retreats at her HumorLab in San Diego, and focuses on high performers in the ROI of laughter. She is quick to distinguish that humor ≠ comedy. Her next book, Funny Means Money: Strategic Humor for Influence & World Domination is due to be published by Forbes Books in winter 2020. 

Tune in as Karyn shares… 

- what it means to be a neurohumorist 

- the relationship between humor and health 

- Norman Cousins’ story, and how it inspired her research 

- the range of people she works with – from patients to professionals, employees to employers 

- that she is working on a new book for Forbes Books – about humor and influence 

- that humor is a whole-brain process that fires off a cascade of neurotransmitters 

- that humor has the power to heal, connect, and enlighten 

- that humor is a holistic complementary process in healing – it reduces inflammation, which is known to exacerbate disease 

- the cardiovascular benefits of laughter – it is an aerobic exercise 

- that laughter can increase the healing properties of the blood – studies have shown that it increases the presence of IgA and T-killer cells, as well as an increased general immune response (in both the short-term and long-term) 

- that laughter = better blood pressure 

- that the regular practice of healthy humor lowers bad cholesterol and increases good cholesterol 

- that healthy humor can aid in the release of tension, as well as increase one’s tolerance to pain 

- that humor lowers cortisol, and can lower blood glucose among pre-diabetic and diabetic patients 

- that laughter can reduce the occurrence of kidney disease among diabetes patients 

- that humor can influence epigenetics 

- that what we do in medicine isn’t working across the board – and if we know laughter and healthy humor works, it’s worth adding into a holistic health regimen 

- that humor decreases anxiety, and increases creativity 

- the close relationship between laughter and tears – and why both are healthy 

- that humor can allow us to express anger and frustration in a socially-acceptable way 

- that just thinking about humor can have the same effect on the brain that humor does – it has an anticipatory effect 

- Victor Borge’s quote: “Laughter is the shortest distance between two people” – and Karyn’s addition, “Laughter has no accent” – it can connect one and all 

- that laughter releases oxytocin, which is a bonding hormone 

- the importance of communication, and how bad for the physiology isolation can be 

- that exhibiting humor increases likeability, which is important for influence and connection 

- her personal connection to invisible illness: through her sons and her mother 

- that laughter can help us change our relationship to illness: from victim to victor 

- the 2% solution: 2% of 24 hrs is 10 min. Can we dedicate that time to healing? 

- her tip to share humor every day: print some funny postcards and send one a day to a friend 

- her belief that some insurance providers are beginning to see the value of being well (in other words, preventive care) 

- the importance of collaboration … and of being the squeaky wheel 

- the importance of intentionally choosing humor 

- the distinction between humor and comedy 

- that if we seek humor, we can rewire ourselves to see it everywhere 

- consistency trumps commitment – make an agreement with yourself to seek humor for 10 minutes each day 

Tonya Butts is the founder of Sweet Apricity, a sweets company that makes elimination-diet-compliant caramels (and caramel sauce!), marshmallows, and more. The company started on a whim: Tonya began crafting her dairy-free caramels as a graduation gift for her best friend Wendy, who manages debilitating symptoms with the Autoimmune Protocol (AIP). While offering powerful relief for those with autoimmune disease, AIP also eliminates a number of ingredients that limit indulgence (read: sweet!) options. Tonya knew what most of us who have tried a strict diet understand: sometimes the greatest gift is a sweet treat that won’t wreck our progress. Sweet Apricity’s Caramels, Marshmallows, and Caramel Sauce offer a sweet reward for all the work it takes to heal. They are grain-free, dairy-free, and refined sugar-free, made only with simple ingredients allowed on the AIP and Paleo diets. Still locally crafted by hand in Portland, Oregon, Sweet Apricity remains true to its roots with real ingredients, small batch production, and a growing line of artisan offerings. From the beginning, the mission of Sweet Apricity has been to offer a treat made with ingredients our bodies will love. In the course of start-up and as the company has grown, Tonya has discovered a shocking truth: that she’s been living with toxic mold symptoms for years. In her “coming out”, she tells Lauren about transitioning from “well” to “sick”, how this has affected her identity and her work-life balance, and how grateful she is to be connected to the caring community of Spoonies (and their loved ones) that Sweet Apricity has brought into her life. 

Join us as Tonya shares… 

- that when she first brought the caramels to her friend Wendy, Wendy’s response was one of total shock and joy – she screamed with delight and immediately began to sob with relief 

- the meaning behind Sweet Apricity’s name 

- why Tonya does what she does: that she wants to serve “a feeling that is elusive to people following a restrictive diet” 

- that while her friend’s restrictive diet was never a roadblock in their friendship, Tonya became very protective of Wendy’s health and of others’ judgment 

- that she lives with PCOS and has had her gallbladder removed 

- that she experienced a lack of follow-up care with regard to both her gallbladder removal and the use of birth control for her PCOS 

- that she unknowingly moved into a moldy house in the PNW, where she lived for 5 years 

- that it’s not necessarily realistic to remove oneself immediately from a moldy home – because of the cost of living and the remediation process 

- that she went on AIP for 14 months to experience what life was like for Wendy – but also because of its healing properties 

- that she gained a lot of weight because of her mold experience 

- that she couldn’t even begin to treat her mold toxicity until she left her old home 

- that she is treating her toxic mold infections with a functional medicine doctor – whom she travels to Seattle to visit 

- that the doctors she sees in Seattle are two of the first to have been trained by Dr. Klinghardt (known for work in Lyme), and utilize ART (autonomic response therapy) to treat her mold toxicity 

- that she also struggles with heavy metal toxicity 

- that she’s been very good at hiding her symptoms 

- that in order to balance work and life, she’s surrounded by colleagues who know her well and want to see her succeed – so she’s able to create accommodations for her chronic illness 

- the irony that someone can spend exorbitant amounts of money for a meal that isn’t safe for them – and the realization that often, eating out/eating while traveling will make her feel unsafe in her body 

- that she has experimented with veganism, paleo, keto, and intermittent fasting over the years 

- that diet change is rarely easy – and the key to success is mindset 

- that she’s an emotional eater – and that’s OK 

- that chronic illness can lend itself to a disordered relationship to food and eating 

- that her biggest struggle right now is with cognitive function – between mold, heavy metal toxicity, and hormone dysfunction 

- that she recently stumbled upon the book Radical Metabolism, which she has found to be very useful 

- that she gets ghost migraines – which affect her vision – when she experiences inflammation 

- that she makes a conscious effort to hide her impairments – and she realizes she is often not having the kindest internal dialogue with herself 

- that she questions – and sometimes doubts the existence – of her chronic illnesses, because they’re invisible, and she is sometimes able to hide them 

- how often Wendy was dismissed by doctors, who tried to tell her the symptoms were all in her head 

- that dairy wreaks havoc on her mental health – so she has to be very careful when she consumes it 

- that she’s been able to reintroduce corn, but she’s unable to consume tapioca 

- one of her favorite indulgences: ‘smores made with her marshmallows and caramels 

Michelle Roberts is formerly of Kantor & Kantor LLP, and now founder of Roberts Disability Law in the Bay Area.  She has spent her entire legal career helping individuals with disabilities obtain income replacement benefits from their employer’s group disability plans, and works from the heart after watching her father, a disabled veteran, struggle to work and support his family while dealing with the consequences of debilitating medical conditions. In so doing, she has worked with hundreds of clients with invisible illnesses and understands the unique challenges of proving disability to an insurance company. Her focus is handling claims under the Employee Retirement Income Security Act of 1974, also known as ERISA. Michelle is a recognized “Super Lawyer” in her field and speaks and writes regularly about the developments in ERISA law. Michelle received her law degree from the University of California, Berkeley School of Law.  

Join us as Michelle shares… 

- what ERISA is, and how it applies to the disability community 

- her personal connection to the disability community, and disabled veterans 

- the role of the opioid crisis in legal proceedings under ERISA 

- that she happily takes on an empathic role with her clients 

- typical social security benefits turnaround time: 1.5-2 years 

- that client surveillance is fairly common in the insurance field 

- the importance of quality mental health care 

- the moral imperative of employers to provide benefits that include mental health services 

- her volunteer work in the local legal community, through Legal Aid and the AIDS Legal Referral Panel 

- tips for Spoonies on obtaining disability insurance and fighting claim denials 

Writer and filmmaker Vincent Sabella lives with OCD, depression, anxiety, and schizoaffective disorder. In 2013, he was diagnosed with non-Hodgkin’s lymphoma; he has been in remission for six years. Vinny’s film Elizabeth Blue was written after a harrowing year during which many of his medications, with which he is diligent, failed. His husband, Joseph, has been his consummate advocate, and has never been fazed by any of his diagnoses. He sits down with Lauren to discuss his life, his work, and the positive mental attitude he brings to all he does. TW: mental health and suicide. 

Listen in as Vinny tells us… 

- that he has just celebrated his 6th year of remission from cancer 

- that he was undiagnosed with childhood schizophrenia until he was about 16 – when he first attempted suicide. He was initially diagnosed with depression. 

- that he had a second suicide attempt at 22 

- that he developed OCD in his late 20s – and his particular form of OCD is related to his health 

- the nature of his schizoaffective episodes: they involve visual, auditory, and tactile experiences. At first he thought the voices he heard were his subconscious or his imagination; as a kid, he would tell his mother he saw a man dressed in black coming out of his closet 

- that mental health wasn’t openly discussed in the ‘80s, when Vinny was a kid 

- that he recognizes undiagnosed mental health issues in his family 

- that when he was a kid dealing with mental health issues, no resources were readily available to him – he couldn’t Google his symptoms, and he wouldn’t have known where to begin searching at the library  

- what it’s like to be institutionalized in a psychiatric facility – and state vs. private 

- that he taught himself to push through his hallucinations, so his early schizoaffective episodes didn’t disrupt his lifestyle 

- that his film, Elizabeth Blue, reflects much of his experience with mental health disorders – and his lead actress was a dark horse for an Oscar nomination 

- that he has a great psychiatrist and is now diligent with his medications, which keeps his condition under control 

- that in 2010, his medications failed because his body built up a tolerance – and Elizabeth Blue is about this difficult year in his life 

- he recognizes the importance of support and information for these mental health conditions – and that many people don’t have access to them 

- that he recognizes most of his hallucinations now; but occasionally new ones occur 

- the importance of language: that certain terminology can minimize and negatively reflect individual experiences of mental health disorders 

- that schizophrenia is often confused with multiple personality disorder 

- the importance of celebrities and media more openly discussing mental health 

- the importance of finding a good psychiatrist when you live with mental health issues 

- that he can tell when he’s “off” – because it feels like he’s hungover 

- how he was diagnosed with non-Hodgkin’s lymphoma: he pulled something in his abdomen that felt like a hernia, which later filled with fluid 

- that a gastroenterologist sent him for a wet scan of his abdomen – which showed either a bad intestinal infection or cancer – and a week from the initial injury, he was diagnosed with the latter 

- how his husband, Joseph, advocates for him in medical settings, and protects him from his own anxieties – and why he’s grateful for Joseph’s care 

- that he endured 5 months of chemo, and was mentally stable during that period of time 

- why he’s opting not to participate in Smart Brain (Transcranial Magnetic Stimulation / TMS) treatment – because he sees his mental health concerns as blessings 

- that staying mentally positive is work – but it’s worth it 

- that working out is a form of therapy for him 

- that he’s never had a medical professional NOT believe him 

- that he donated a portion of proceeds from Elizabeth Blue to NAMI – The National Alliance on Mental Illness 

- that he continues to be involved with NAMI 

- that he wanted to get involved with Covenant House (he has a soft spot for homeless youth), but was unable to because of his mental health status 

- the importance of privacy – and sharing only when and if you’re ready 

- that the LA LGBT Center offers free and low-cost medical screenings 

- the films he turns to in order to calm down 

In Part 2 of Lauren’s interview with award-winning patient advocate Trishna Bharadia, we dig deeper into the details of her work and what drives her every day. While she has faced instances of discrimination and seen the same happen to her friends, she remains strong and uses these episodes as teaching moments for others. Her passion truly keeps her going, and she recognizes the historical importance of patient advocacy, drawing inspiration from the other patients and advocates she encounters. While she sees that no two patients are going to have the same path, she emphasizes the importance of finding the right kind of support to live a full life. 

Tune in as Trishna shares… 

- stories of chronic invisible illness discrimination 

- a discussion of visible disability markers, such as wheelchair use 

- the various organizations she works with as a patient advocate 

- what she does as a patient advocate – writing, media, consulting, and beyond 

- the importance of seeing patients as an integral part of developing therapies, from medical equipment and pharmaceuticals to bedside manner and training 

- what makes her passionate about patient advocacy 

- that patient advocates don’t need special training – being patients themselves is what usually fuels their passion and expertise 

- that patient advocacy starting with the HIV/AIDS epidemic really paved the way for the patient advocates of today 

- the importance of friends and loved ones who are accommodating of the needs of the chronically ill 

- her tips for anyone who is living with chronic illness 

- that she not only serves as inspiration for others, but she is also inspired by the other patients and advocates she encounters 

- her favorite exercise activity: Zumba! She goes to inclusive classes taught by her sister, Anisha 

Trishna Bharadia is an award-winning patient advocate, and was diagnosed with relapsing-remitting multiple sclerosis (MS) at the age of 28. As she tells Lauren in this episode, the diagnosis helped her find her true purpose: to actively campaign for patient engagement and to represent the possibilities of living – and thriving – with MS. She has since become a public speaker, writer, vlogger, blogger, consultant, advisor, and educator in the chronic illness sphere, volunteering with organizations such as the MS Society, Asian MS, ADD International, and the MS Trust (among others), as well as being recognized by the British Prime Minister with the Points of Light award, which recognizes outstanding volunteers who are making a change in their community and inspiring others. In 2015, Trishna was selected out of thousands of nominees to take part in The People’s Strictly – the UK version of Dancing With The Stars, which features individuals making an impact in their communities, with proceeds going to Comic Relief. Her persistence is made all the more extraordinary because her advocacy work is done in her spare time! She works full-time as a translator, and has done so since before her diagnosis. She campaigns with added vigor in the Asian community, as well as with young people. More on that part of her work in a future episode! 

Join us as Trishna shares… 

- how she was first diagnosed – and that she was initially misdiagnosed, as are so many fellow spoonies 

- that a newly-qualified doctor provided her diagnosis; and that an MRI, spinal tap, and blood tests confirmed it – after she lost feeling down one side of her body 

- that waiting for a diagnosis was stressful, but that the diagnosis itself was a relief 

- that current treatments for MS don’t cure the disease; however, they slow degeneration and reduce the severity of symptoms 

- that she wasn’t initially offered direction and support for her diagnosis 

- that she was on her first treatment for 3 years before developing an immunity to it; and that she developed two long-term conditions in response to the next treatment – urticharia (chronic hives) and angioedema (deep tissue swelling) 

- that she sees a neurologist and an MS specialist for ongoing care 

- that she travels 80 miles round-trip to see her MS specialist – but she does this to see the best of the best 

- that she recognizes the importance of lifestyle and mindset in managing her condition 

- the importance of asking for help 

- that she now relies more on her parents than ever before – and she’s learned to embrace that shift positively. She’s learned to see this changing relationship as the gift of extra time with her family 

- that her younger sister has ulcerative colitis, and those symptoms started the same year Trishna’s MS symptoms began; and that her identical twin sister was diagnosed with MS 2 years after she was diagnosed 

- her day-to-day symptoms: fatigue and bladder issues 

- as an advocate, the current focus of her work is patient engagement – and her work has gone beyond just MS, and into all patient communities 

- that in UK airports, sunflower lanyards indicate that someone has an invisible disability, so they can seek assistance without judgment 

Becca Lustgarten is a vocalist, writer, and classically-trained actress. A few years ago, after suffering severe digestive distress, she was diagnosed with Celiac disease. Celiac is more than an allergy – it is a degenerative disease that causes major digestive destruction if left untreated. The only treatment? To go gluten-free. Becca joins us to share her story of discovery, and how she’s worked to heal her gut since her diagnosis. 

Listen in as Becca shares… 

- that she was always a sickly child, and had physical manifestations of her emotional reactions to stimulus 

- that she discovered symptoms when she was working at a bakery in NYC, of all places 

- that while beer contains gluten, spirits don’t – even vodka and gin 

- that every Celiac patient has a radically different experience of symptoms – and often, as in Becca’s case, it would feel like a hangover 

- that Celiac patients are notoriously at risk for malabsorption because of the states of their stomachs 

- the availability of gluten-free foods 

- how getting Celiac changed her relationship to food and eating – and even drinking (bye, beer!) 

- restaurant etiquette when you have Celiac 

- feeling good and looking good – and the relationship between disordered eating and having to change one’s diet for health-related reasons 

- men, women, and our relationships to food, eating, and shame 

- boundaries – and what to do when you’re sick at work 

- her favorite GF foods 

- the importance of genetic testing 

- the role of CBD in managing symptoms 

Listen in to Part 2 of Lauren’s interview with Dr. (of music!) Ginny Orenstein, who healed herself of lupus SLE, rheumatoid arthritis, two benign brain tumors, and stroke with Medical Medium Anthony William’s protocols for diet and lifestyle. Not only has Dr. Ginny been able to tackle her own health concerns, but after a major cardiac event her husband has also joined her on the journey to wellness through MM…and has seen remission of heart damage, diverticulitis, diverticulosis, and a diseased colon. It seems the stuff of fantasy, we know! Tune in for this real-life story of renewal. 

Join us as Ginny shares… 

- that, in the beginning of her recovery, she was in a devastating car accident – and didn’t flare. She attributes this to MM 

- that 1 year after starting MM protocols, her brain tumors were gone – and there was no sign of her having had a stroke 

- that she surmises MM protocols saved her from spinal surgery post-accident. She applied protocols specifically for inflammation and spinal health 

- that she sets alarms throughout the day to remind her to pause and breathe 

- that her husband was dead for 46 minutes after cardiac arrest, and doctors found his main artery was 100% blocked, the bottom muscle of his heart was so damaged, it would never heal – but whatever he’d been doing the last few months (MM), it had saved his life 

- that at this point, Ginny decided her hubby was going fully on the heart healing protocols from MM 

- that 3 months into MM heart-healing protocols, her hubby showed signs of healing in his heart – and that based on this success, his doctors estimated that 6 months later he’d have no signs of prior cardiac concern 

- the role of Reiki, meditation, and mindfulness in her daily life – and how she learned these lessons from MM 

- the importance of boundaries in mindfulness – and in removing toxic influences from our lives in every way in order to facilitate healing 

- that healing foods are meant to unblock you – and that once you’re unblocked, then you can begin to heal 

- the importance of self-advocacy, and how she learned it as a chronically ill patient – and on MM 

- the importance of community in chronic illness 

- that she was initially told by doctors that because of all the medication she required, she couldn’t risk pregnancy – and now that she’s almost off all her medication, she and her husband can begin to try for a baby. Wish them luck! 

At 34, Dr. Ginny Orenstein (doctor of music!) had finally been diagnosed with severe systemic lupus erythematosus (SLE), rheumatoid arthritis in her chest and spine, two benign vascular brain tumors, and a microvascular ischemic brain disease (stroke). Her life was one of confinement – she had been bedridden for 2.5 years, and prescribed medications and chemotherapy were causing more harm than good. Her Hail Mary was played out on a whim: she purchased Medical Medium by Anthony William – now known widely himself as the Medical Medium. She started following his protocols and, with her doctors’ supervision, made lifestyle changes – particularly with regard to mindset and diet. Four years later, Ginny has done a total 180 – she has shrunk the brain tumors to almost nothing, her brain shows no signs of stroke, her lupus and RA are in total remission – and she’s almost entirely off prescription medication. As she began to see results, her husband became gravely ill and suffered a heart attack. He was witness to Ginny’s healing and decided to join her on the Medical Medium journey. He has now almost entirely reversed severe heart damage, diverticulitis, diverticulosis, and a congenitally diseased colon. This couple has changed their lives completely. We hear a lot about Medical Medium (MM) in the chronic illness community, and we thought – who better to tell us more about their experience with his work than a woman who has healed herself – and her hubby – with his advice? Listeners: meet Dr. Ginny. 

Listen in as Ginny shares… 

- that she had her first flare in 2003, which was likely triggered by extreme stress 

- the frustration of seeking her first diagnosis 

- that fluid around her heart and lungs were drained in 2012; her pericarditis persisted and would flare monthly after this point 

- that she first saw a rheumatologist in 2013 

- that Obamacare was really helpful to her, even if it was a long and winding road 

- that she didn’t get her lupus diagnosis until 2015 – 13 years after her first flare (and despite a negative ANA result) 

- that she had adverse reactions to almost every treatment she was prescribed 

- that she almost died because of drug interactions 

- that she met the rheumatologist who turned her life around almost by accident – and that he campaigned to get her off prednisone, telling her the “P” in prednisone stood for poison 

- that she tried a ton of diets to lose the weight she gained on prednisone 

- that she had read books on lupus that informed her she had 5 years left to live after diagnosis 

- that she stumbled upon Medical Medium in 2017, and brought it to her doctors to ask their advice – and that they were thrilled (GI, rheumatologist, and cardiologist were on board from the start)  

- that her transformation was incredible, but it didn’t happen overnight 

- the loneliness of living with chronic illness 

- that despite our love for our advocates, chronic illness can still strain relationships 

- that she started to notice a change in her health by week 4 on MM’s protocol 

- that after 6 weeks on MM protocols, she was no longer pre-diabetic or anemic 

- that because she very gently and slowly eased herself onto MM protocols, she didn’t experience any negative withdrawal symptoms 

- that mindfulness and energy healing have become a new focus and career path for her 

- that she is now writing a book about her healing journey 

- the interconnectedness of body and mind, and how she could only heal by working on both 

- that she relies on Reiki, breathwork, meditation, and yoga – among other practices – to target her mindful healing work 

- that her husband’s stoma healed incredibly quickly when he went whole hog on MM protocols after major surgery 

Eric is originally from Philadelphia, PA, and was born with cystic fibrosis. Diagnosed at the age of 1, his original life expectancy was between 10-14 years. As advances in medical treatment have moved forward, so has his life expectancy…so much so that Eric has now, at 41, surpassed his doctors’ hopes. He moved to Southern California as an adult to take advantage of the statewide Genetically Handicapped Persons Program, which enables him to get his treatments and medications fully covered by insurance. Rather appropriately, he has channeled his passion for environmentalism – and the idea of creating pathways to combat climate change – into a career as a solar engineer. You may hear him cough periodically in this interview, which is one of the symptoms of living with CF – as mucus builds up in the lungs, he has to cough it loose. 

In this episode, we dive into.... 

- what cystic fibrosis is and how it affects the body 

- that when Eric was born, the life expectancy for patients was 10-14 years; that advances in treatment have increased his life expectancy greatly – and he has now surpassed doctors’ expectations 

- how he was initially diagnosed at the age of 1 

- that CF affects the exocrine glands, which can include the digestion – as well as the pancreas and lungs 

- that he takes 80+ pills a day to survive 

-  the Genetically Handicapped Persons Program, and how he moved to CA to take part in this program and get his treatments and medications fully covered by insurance 

- that his parents were not only active fundraisers for CF awareness, research, and treatment; but that his mom ended up going to nursing school and becoming a CF clinic nurse 

- where we can find out more about CF: through the archived video blogs of the late Claire Wineland 

- that it takes him at least 2 hours/day to complete his treatments, and he has to adjust his lifestyle around it 

- that he has worked part-time for most of the last decade in order to effectively manage his health – to manage his stress 

- that there are varying levels of CF severity – some patients only have GI problems, and no lung issues; others aren’t diagnosed until they are in their 40s or 50s 

- that he had part of his lung removed at the age of 11 because it was a source of repeated infection; after this surgery, he went several years without being admitted to the hospital with an infection 

- that he developed a community during his hospital stays, and he looked forward to seeing his friends during his visits 

- “the world kind of absolves you of responsibility when you go to the hospital” 

- that to his knowledge, he is the only one of his peers from growing up who has survived CF 

- the emotional toll of losing friends so young 

- that he learned to be his own health advocate at an early age 

- that CF doesn’t define who he is – it’s an aspect of his lifestyle 

- that his work is a source of inspiration, and an area in which he’s willing to spend his limited time 

Originally launched as a means of sharing her craft projects, Kendall Rayburn’s namesake blog has since evolved into her passionate full-time occupation: a place to pour her heart into content across the lifestyle spectrum (see: plus-size fashion, family-friendly travel and activities, home decor, recipes, and more). It has also become a powerful vehicle for sharing her struggles with endometriosis — all with the token contagious positivity that’s garnered her a devoted following. Add to that her candid takes on being a Spoonie mom to son Wyatt, who lives with autism, and you’ve got an oasis of advocacy and lifestyle like no other. We dare you not to fall in love with the happy, hectic world of Kendall!

Tune in as Kendall shares:

• how she was gaslighted from an early age to believe her period pain was normal
• that she became aware her son was on the autism spectrum when he was 18 months old
• that she also lives with anxiety, depression, and PTSD following adverse childhood experiences
• that she was diagnosed with endometriosis at 22, and told by her doctors that she was so far advanced in her disease that she needed to consider starting a family immediately if she ever wanted to have one
• that the pain of her diagnosis forced her to finish college online
• that after her second child, she was offered a hysterectomy for her pain — and that by the age of 26, she was undergoing menopause
• that to this day, she has had eight surgeries for her pain — and it is still debilitating
• why she regrets her hysterectomy
• that she was never offered therapy as she navigated both her diagnosis and her son’s — and why it plays such an important role in her life now
• how medical research has failed her as a woman living with stage IV endometriosis
• how she manages her pain now
• what her son has taught her about resilience
• her advice for others living with chronic pain and/or advocating for others

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society. Finally diagnosed with EDS at the age of 24 (after many years of chronic pain and frustration), she channeled her healing into patient advocacy. Her job is to raise global awareness of rare, chronic, and invisible diseases, with a focus on the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders. Lara manages coordinated medical collaboration, raising funds for research, and focus on global progression, education, and awareness. From 2013–2015, Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS, and she regularly works with umbrella organizations lobbying in British Parliament.  She is a member of the Patient Empowerment Group for Rare Disease UK and the Rare Disease International Patient Advocacy Committee. Before joining the Society, Lara ran EDS UK from 2010-2015. In 2016, she completed expert-level training in medicines research and development, and became a fellow of the European Patients Academy, EUPATI. Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017, and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

  Join us as Lara shares… 

 - that she was initially believed to have Marfan syndrome – another connective tissue disorder 

- that there was a major delay in her diagnosis of Ehlers-Danlos with hypermobility 

- that before her diagnosis, she was prescribed certain surgeries which ultimately did more harm than good – and that she should have had different surgeries that were never realized 

- that EDS’ best friend is muscle strength – and physical therapy is really helpful 

- the  dichotomy of the struggles she experienced with regard to her sexuality and disability as a teenager – and how tough it was to live with chronic pain from EDS while coming out 

- The Ehlers-Danlos Society’s Project ECHO®, which aims to streamline diagnosis and treatment protocols for EDS by 2022 and empower medical practitioners with a deeper understanding of the syndrome in order to provide better clinical care – and access to said care 

- that the international approach of The Ehlers-Danlos Society is really opening pathways to understanding this complex spectrum of disorders – and how this is inspiring not only Lara, but also her colleagues 

- that there are currently 13 different kinds of EDS recognized, with a 14th in consideration 

- that The Ehlers-Danlos Society has a global registry for patients to increase understanding of EDS, HSD, and related disorders 

- that genetic testing is not fully accessible, which perpetuates our lack of functional clinical knowledge with regard to the spectrum of EDS and HSD 

- the challenges of being in the public eye as a patient who “looks just fine”, works incredibly hard, and advocates so personally for EDS and HSD 

- how demanding her work is – but that it’s worth it for the strides made forward in EDS advocacy 

- how chronic illness has impacted her relationships, particularly on a personal level 

- how a support system can make or break a chronic illness experience 

- the role of fatigue in chronic illness – and in determined, non-stop advocacy 

- the importance of positive mindset in symptom management 

- the need for continued research into EDS 

- that there is no such thing in the medical world as an EDS specialist 

- the added challenge of having a disability that’s invisible 

- why survivors of EDS call themselves Zebras 

- her vision for the future of EDS diagnosis and treatment 

T. Sydney Bergeron Mikus is an award-winning writer, artist, designer, model, and activist based in NYC. They live with TBD (tick borne disease), including Lyme, Bartonella, and ehrlicia, as well as POTS (postural orthostatic tachycardia syndrome). They create work driven by healing advocacy, art, and narrative as tools for change, and self-care as disruption. They are the founder and director of Simple Politicks, and co-host the Invisible Illnesses Support Circle at The Wing. They are also an inaugural member of the disability council at The Wing, advising on events, new spaces, and other accessibility topics. Sydney is a queer, nonbinary femme living with chronic illnesses that cause intersystem disabilities. 

 Listen in as Sydney shares… 

 - how it took almost a decade for them to be diagnosed 

- that tests for tick-borne disease can be very unreliable; and even inconclusive results can mean diseases and co-infections are present 

- that sometimes symptoms are hard to pinpoint, especially if they are subtle and feel like “just part of being a person” 

- that their mom also has Lyme 

- that so many Lyme specialists do not take health insurance, which makes treatment restrictive 

- that they waited until they were really sick to finally get treatment 

- that they started treatment with holistic methods before starting intravenous treatment; they were supposed to get a PICC line, but discovered they were allergic to heparin (blood thinner), which is used to clear PICC lines in treatment 

- that they are combining holistic and intravenous treatments now, and will soon start antibiotics again to combat TBD symptoms 

- that they are now using therapies that track the frequencies of bacteria in their blood 

- that the CDC does not recognize Bartonella as a TBD, but most Lyme organizations do 

- that they have their cat, Lupin, registered as an emotional support animal – and he really helps with their mental health, as well as supporting when they have physical symptoms that crop up 

- that many TBDs have overlapping symptoms, which makes them even harder to diagnose, treat, and be aware of in general 

- that Lyme can cause POTS – not in all cases, but in some 

- that water, salt, and beta blockers have been useful for their POTS symptoms 

- that Ritalin has been helpful for brain fog 

- that they were very close to a final diagnosis of Hashimoto’s at the time of recording, and this has now been confirmed 

- that they didn’t identify as disabled for a long time – but they do now 

- that they are their own advocate in most ways, having dived into research of their conditions independently – but that their mom has also been a great support 

- that brain fog is incredibly frustrating 

- their heroes in the invisible illness community, who have inspired them to be more open about living with disability and to become more empowered in that identity 

- how they have channeled their experience into advocacy 

- stories about accessibility, accommodation, inherent privilege, and disability awareness 

With a vision to build the safest, most consistently effective and non-invasive solution to the epidemic of chronic pain, Brendon Lundberg (a chronic pain survivor himself) co-founded Radiant Pain Relief Centres in Oregon. The centres use an FDA-approved and Mayo Clinic-tested treatment for chronic pain called Scrambler Therapy, which targets the brain’s response to pain in the body and aims to retrain its feedback loop by encouraging neuroplasticity. Brendon combines his mission to change the way chronic pain is treated with deep experience in healthcare management and business development; he and his co-founder, David B. Farley, M.D., released their book, Radiant Relief – A Case For A Better Solution To Chronic Pain in 2018. In this episode, Brendon sits down with Lauren to discuss the his work and the growth of Radiant Pain Relief Centres, as well as to share some beautiful stories of healing – and triumph over pain.

Listen in as Brendon shares… 

- about the therapy, education, and experience that Radiant Pain Relief Centres deliver 

- how chronic pain affects patients, and the joy of helping them heal 

- that all pain is neurogenic, though experienced in the tissue – its origin is in the brain 

- that most doctors are trained in outdated pain research from the 1960s, and newer technologies and research are much more comprehensive and offer hope for relief 

- that many chronic pain patients are disbelieved or brushed off by medical practitioners 

- the definition of chronic pain, and how chronic pain is a protective function of the brain that’s become maladaptive 

- that Radiant Pain Relief Centres use an FDA-approved and tested treatment for chronic pain called Scrambler Therapy, which encourages neuroplasticity: attaching electrodes to the skin in proximity to the site of pain, and sending signals to the brain to rewire its understanding of pain at the site 

- how neuroplasticity works: it dynamically re-trains the brain; and the brain learns through repetition 

- that patients average an 84% reduction of pain using the technology at Radiant Pain Relief Centres, over the course of a few weeks of treatment 

- how life-changing chronic pain relief can be 

- his take on the opioid crisis 

- why Radiant Pain Relief Centres shares a heart-centered mission for Brendon: because he is a survivor of chronic pain, which he has successfully treated using Scrambler Therapy 

- the neuroscience of pain: how the brain triggers the nervous system and tissues in the body to experience pain 

- the most prominent side effect of Scrambler Therapy: fatigue, because the brain is working overtime to balance and adapt 

- that, because of pain’s origin in the brain, pain relief treatment can be accelerated when a psychological element is at play 

- the few restrictions on treatment at Radiant Pain Relief Centres: expectant mothers and MS survivors 

- Brendon’s take on the current US healthcare model 

- that the relief of chronic pain begets patient empowerment and freedom 

Noah Gardner is a scientist based in Massachusetts. He was diagnosed with type 1 (juvenile) diabetes in 1995, at the age of 12. While this autoimmune condition is genetic, his diagnosis came completely out of the blue to both him and his family. A little background on T1 diabetes: in an autoimmune reaction, the immune system attacks beta cells in the pancreas (which produce insulin), thus destroying them. Hence the need for insulin and devices like insulin pumps, which effectively act as an external pancreas for survivors. 24 years since his diagnosis, Noah is living in central Massachusetts with his wife and toddler, working at biotech company Intellia Therapeutics on gene editing. And he is here to share his story with us!  

Join us as Noah shares… 

- the classic symptoms of T1 diabetes 

- how he was diagnosed 

- that T1 diabetes is a genetic disease and an autoimmune condition 

- how T1 diabetes works 

- how he has worked to manage his symptoms 

- the distinction between his pre-diabetes life and his post-diagnosis life; and the physical and emotional grieving and growth processes involved – especially as a child 

- technologies that have improved his quality of life (and these get better every year): insulin pumps and a CGM (continuous glucose monitor) 

- what makes T1 diabetes easier to manage than some other invisible illnesses: it’s pretty straightforward, because treatment is very targeted 

- health complications and implications of diabetes 

- that, at 36, he is already dealing with one complication of diabetes: glaucoma 

- the community he has slowly built in his post-diagnosis life 

- how he has become an advocate through the Juvenile Diabetes Research Foundation 

- the stigma associated with diabetes, and how this can affect kids in particular 

- the biggest stressors associated with diabetes: health insurance (an awareness of always being sure to have it), and that you are constantly on alert re: your symptoms and management 

- that there is still no cure for diabetes 

- how being chronically ill has impacted his personal and professional relationships 

- the challenge of traveling with an insulin pump and a CGM 

- his thoughts on the insulin crisis and health insurance concerns with regard to diabetes 

- his tips for living with T1 diabetes, and how families can manage the disease together 

Em & Kate are the sisters behind the wellness blog Two Being Healthy. Both live with lupus, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), mast cell activation disorder (MCAD), and cytochrome mutations (which have affected their ability to metabolize certain drugs). Having spent much of their adult lives living with and navigating the symptoms of invisible illness, the two act as co-advocates for one another and have been by each others’ side through their ups and downs. Their goal is to shine a light on invisible chronic illnesses, share all they’ve learned along the way, and document their everyday journey. In finding community with each other, they have given community to countless others on the road to wellness.

Join us as Em & Kate share… 

- that on top of lupus, POTS, EDS, and MCAD, Em also has muscle myositis 

- that Kate is also prone to chronic migraines 

- that both women began to show symptoms when they were around 17 

- that Em’s initial lupus symptoms came on like an extended flu that never healed 

- considering both women have similar conditions, they are on different medications 

- that the medication journey is a never-ending one – as their bodies shift, their medications do 

- that the most constant in their medication regimens has been an immune booster (which lowers antibodies) 

- the psychological journeys they’ve been on in reaction to their physical struggles 

- that low-histamine diets has all but eliminated their MCAD symptoms, in addition to histamine blockers 

- that, in addition to each other, Em & Kate have been able to lean on their mom for support – and, as they were to discover, she lives with some of the same conditions that they do 

- the link between POTS, EDS, and MCAD 

- that they had to give up yoga because of the hypermobility associated with their EDS, and now do mat Pilates instead 

- why they advocate for therapy, and awareness of emotional fluctuations in relation to physical frustrations 

- the challenge of being undiagnosed 

- the grieving process of accepting your body as it is, post-diagnosis 

- that they used to be much more private about their conditions, and suffered social anxiety as a result – but tired of the isolation, and began to own their lives fully 

- that being chronically ill has developed their ability to communicate: because often, friends wouldn’t understand their conditions or that they were invisible 

- that they’ve been discriminated against for using handicap parking passes and taking elevators, because they are young and healthy-looking 

- how being chronically ill has taught them to remove their inherent judgments of others 

- the gender divide on discrimination 

- that the added stress of not living up to the standards of people who don’t understand us can make us sicker – and sometimes, losing those relationships lifts a burden and allows us to heal 

- what inspired them to start Two Being Healthy, and their individual strengths within the blog 

- how empowering the blog has been for them 

- why they are so in touch with their emotions, and the importance of a good cry 

- why having a doctor who doesn’t understand you can be soul-crushing 

- the importance of learning to be your own advocate and trusting your body 

- the connection between the onset of symptoms and anxiety, and how having a comfort pack in your handbag can reduce worry 

- why managing health insurance requests is a full-time job 

- why they joke that they are each other’s hype women, and how that has strengthened their bond through chronic illness 

- the importance of a doctor whose ego is not involved in their decisions and diagnoses 

- the importance of a circle of trusted friends, and a support system – even if it’s on FB 

- the importance of finding ways to reduce stress and increase comfort 

- the importance of moderation, even in the application of healing modalities – and why you still need to live your life and do the things you love 

In an effort to preserve this guest’s privacy, we are using an alias in this episode – an Uninvisible first! Ilene is an award-winning 6th-grade elementary school teacher. She is also a survivor of rape, “endometrial symptoms” (aka, undiagnosed endometriosis – chronic pain that was only compounded by her sexual assault), and hypothyroidism. She joins Lauren for a no-holds-barred conversation about her how her health and physical experiences have affected her emotional world, and informed the woman she is today. A note: while rape and sexual assault are not traditionally categorized as “invisible illnesses”, the emotional scarring these experiences can leave behind is most certainly a mental health issue – and a social issue, at that. We hope that by allowing Ilene to share her story, we can provide a platform of encouragement for survivors to speak their truth – whether that means they heal by sharing their stories, or heal by choosing not to. You are with us, and we are with you. We stand together.

Listen in as Ilene shares… 

- that never being officially diagnosed with endometriosis made her mentally tough: if doctors wouldn’t legitimize her pain, she wouldn’t, either – and she has taught herself, for better or for worse, to “push through” 

- that she learned she didn’t have a “normal” reproductive system because she got her period and was spotting very early 

- that she was diagnosed with hypothyroidism at the young age of 14, because she exhibited extreme fatigue 

- that she was put on birth control to regulate her periods, but quickly taken off it because it did not interact well with her thyroid medication – and luckily, her doctor spotted the issue (a risk of potential stroke) 

- that she had a cervical infection at 21 that gave her acidic discharge – the kind that burned through her underwear (this is not uncommon, and can be brought on by stress) 

- that her cervical infection and its subsequent doctor’s appointment allowed her doctor to find a cyst on her cervix which she removed 

- that she was raped the day she had the cyst on her cervix removed – after sharing with her rapist (a then-boyfriend) that she was not to have sex while the removal area healed 

- that, because of shame and embarrassment, she didn’t tell her doctor she had been raped when she went back the next day to have her cervix checked 

- that, looking back on her story, she was told over and over again by colleagues and medical professionals that she should be able to function normally with her painful periods 

- that, in grad school, she started having fainting spells associated with a regrowth of her cervical cyst and another cervical infection 

- how long it took her to acknowledge her experience with her former partner as rape 

- how meal and bathroom breaks as an elementary school teacher create a lot of inconveniences with regard to female reproductive system management, especially for people with pain and heavy bleeding (Ilene would carry extra pants and underwear, and would bleed through multiple pads AND tampons, as well as clothing) – while managing young children 

- that a doctor finally told her she could elect to have an invasive surgery to officially determine an endometriosis diagnosis – but Ilene opted out of the surgery, instead telling herself she didn’t have endometriosis, and was “not sick” 

- that she continued to have cervical cyst regrowth over the scar tissue caused by her rape – and she had to have the cyst removed 20+ times 

- that she dove into family history to understand her reproductive system 

- that her paternal aunt had once been diagnosed with a condition called “swampy uterus” – a reflection of how women are so often perceived by the medical system 

- that getting an IUD was a major factor in her physical recovery (once she got past the concern of hormone disruption); before that, it was regular monitoring of her hormone levels and fertility, which allowed her doctors to customize estrogen and progesterone shots. In addition, she had a light D&C (dilation & curettage), which is a procedure typically used to remove tissue from the uterus during or after a miscarriage or abortion, or to treat fibroids and polyps – and this scraping of her uterine lining was immensely helpful in reducing her symptoms and pain 

- that she has resisted the need for a hysterectomy because she wants to have children 

- that meeting someone else with endometriosis while on her journey to wellness helped to legitimize her own symptoms – she suddenly understood it was all real 

- that she channeled much of her rage at her rapist into blame for the pain in her body 

- her mantra: “You are unbreakable” 

- the moment when she lost her sh*t over the remarks of a male doctor-in-training – and her female nurse defended her 

- that her mother was also raped, and at knifepoint – and so she felt it was her duty to conceal the truth of her circumstances to her mother for a long time 

- why she loves acupuncture 

Jameisha Prescod is a London-based activist who lives with lupus, Raynaud’s, and femeroacetabular impingement (FAI); she is also waiting on possible diagnoses of endometriosis and Celiac disease. She is the founder of You Look Okay To Me, an online platform for pain and chronic illness that is chock-full of content about invisible illness, disability, and their roles in tech, art, culture…and everyday life. In this episode, Jameisha sits down with Lauren to talk about gaslighting in the medical industry, and how this has affected her not only as a woman, but also as a woman of color; she also talks about her journey to diagnosis, self-advocacy, and her experience of workplace discrimination. At 23, Jameisha is not only wise beyond her years, but she is also incredibly open, honest, and real. She has founded a thriving community and regularly produces entertaining videos about living with chronic illness and disability, which appeal not only to the Spoonie community, but also to those seeking perspective and understanding.

Join us as Jameisha shares… 

- that she first started showing symptoms at 16 

- that her doctors dismissed her – and her symptoms – at first; medical providers presumed she had a psychological disorder before they took her physiological symptoms seriously 

- that, where the NHS failed her, she sought assistance from a private health insurer 

- that it was on her to bring resources and information to her doctors in the NHS 

- that it wasn’t until she made a complaint to the NHS that she was referred to a top rheumatologist with a specialty in lupus, Professor David D’Cruz 

- that she’s been discriminated against by medical providers not only for being female, but also for being a woman of color (especially with regard to her reproductive health), and for presenting as younger than she is 

- the prevalence of unconscious bias in the medical industry, especially with regard to women’s reproductive health 

- that as a child, she thought her Raynaud’s was cool because her fingers would change color! 

- that many of her illnesses have a genetic link 

- the “ping-pong blame” of having multiple chronic illnesses: that medical providers often blame one better-known illness for another’s symptoms 

- that she often has to drop her well-known doctor’s name to be taken seriously by medical providers; and the irony of requiring a man’s name to legitimize her symptoms 

- the relief of being vindicated in a diagnosis 

- the frustration of having to fight with doctors 

- how she’s learned to be her own advocate, and how she advocates for friends 

- reflections on a talk she recently attended with the founder of the health app Babylon, and how AI has less inherent bias than a human medical provider is apt to have 

- that her entire family works as advocates for one another – from her grandparents to her mum 

- the importance of speaking up for your needs. While this advocacy started for her at the hospital, it now extends to the workplace and in social situations. She is no longer a “keep calm and carry on” type of person 

- the BBC Extend scheme, and how her employers work entirely around her accessibility needs 

- that she was fired from her previous job for being disabled – which is entirely illegal; but she opted out of taking legal action 

- a discussion about disability discrimination laws in UK workplaces 

- what inspired her to start You Look Okay To Me 

- how she had to adjust her career aspirations around her physical limitations 

- that she is aware of both able-bodied and disabled audiences when producing her content, keeping both in mind to keep a light, educational tone without being “finger-waggy” 

- that her aim with You Look Okay To Me is to create an open space for learning and comfort 

Alison Yates is a multi-hyphenate creative living in Los Angeles. A comedienne and actor, producer, writer, photographer, social media manager, website designer, and skincare consultant (phew!), she performs sketch and comedy regularly with Second City and the Groundlings, and has a production company called The People Zoo. She’s been featured on several TV shows, including Jane the Virgin and Mom. She’s lived with migraines since she was 6 years old, and depression and anxiety since she was 15; she very clearly sees the direct link between her migraines and her mental health symptoms.

Listen in as Alison shares… 

- when she had her first migraine (aged 6), and that she sees a genetic link in her family 

- that she also has digestive issues associated with her migraines and emotional wellbeing, and as such is always aware of the location of the nearest bathroom 

- that her digestive issues are currently undiagnosed (have been diagnosed as IBS in the past), but she manages her symptoms with dietary restrictions 

- how her migraines come on and manifest 

- treatments she’s tried to manage her migraine symptoms: pharmaceuticals (including Imitrex, Cymbalta, and Aimovig), marijuana and CBD, sleep, chiropractic, massage, physical therapy, acupuncture, Botox, daith piercing, yoga, meditation, and dietary changes 

- that many migraine medications also have an antidepressant effect 

- that women are more prone to migraines than men 

- that her entire life is designed around her migraines 

- that there is a cause and effect for every migraine, and her migraines are easily triggered by bright lights and spinal re-alignment (especially Alexander Technique and chiropractic) 

- that she sees a direct link between her migraines and depression/anxiety 

- that she overdosed on her migraine meds when she was 18 

- that she struggled to access Aimovig (monthly migraine medication) for 5 months, and finally got it 

- that she’s gone through at least 15 medical practitioners and medical practices in an effort to control her symptoms 

- that she experiences numbness after her aura – very similarly to stroke patients; sometimes she can’t distinguish whether she’s having a stroke or a migraine 

- that she’s at a higher risk for stroke because of her migraines 

- that she has learned to be her own health advocate 

- that she makes occasional visits to the ER for morphine if her pain is off the charts 

- that her migraines have wrecked her financial life and spiraled her into debt – between specialists, insurance costs, and surgeries 

- the guilt she feels when canceling plans when she has a migraine coming on, and the gender divide on guilt and responsibility toward others 

- that remote work has been essential to her earning capacity because she can’t work 9-5 

- that she’s created her own community of migraine survivors through social media 

- that, while social media can be helpful in terms of building community, it can also be incredibly alienating 

- that it’s much easier to talk publicly about her migraines than it is for her to address her anxiety and depression 

- that migraines have given her some agoraphobia and social anxiety 

- that she was told early on by friends that her “feelings were too big”, so she retreated into herself and her comedy is drawn from an accordingly deadpan style 

- that acting has been a productive outlet for her depression 

- the prevalence of mental illness in the entertainment industry 

- that trying to “be better” is exasperating 

Join us for another joyous installment with the incomparable Sascha Alexander. Remember that time she thought she had toxic mold, in addition to interstitial cystitis, candida, and Hashimoto’s disease? Well, guess what? That toxic mold ain’t so moldy…it’s Lyme! Lauren sits down with Sascha to find out how she was ultimately diagnosed, and how she’s increasing her detox protocol to rid her body of one of the most insidious of invisible diseases: the tick-born illness, Lyme.

Listen in as Sascha shares… 

- that the detox protocols she had begun 5 years ago to treat toxic mold have actually given her a leg up on Lyme treatment, as some of these protocols overlap (infrared saunas, antibacterials/antimicrobials, coffee enemas) 

- that she is now working with the same doctor Lauren works with for her thyroid: Dr. Lisa Hunt at Holtorf Medical Group 

- that the more updated protocol for treating Lyme is to boost one’s immune system, rather than to deplete it entirely with long-term IV antibiotics 

- that Sascha’s current treatment regimen includes ozone therapy, peptide therapy, and FMT (fecal microbiota transplantation) 

- how Lyme works: it survives by destroying the inter- and extra-cellular nervous systems 

- that Lyme and syphilis are both spirochetes, and can look similar under a microscope 

- the different tests used to diagnose Lyme 

- the gold standard for Lyme testing in the US: iGeneX, which is even more accurate and detailed than the Western blot test  

- that Lyme thickens blood cells with biofilms (almost like an exoskeleton around the cells), and the biofilms need to be dissolved before treating the infection; this thickening of the blood is similar to HIV infection, as well 

- Lyme is known as the “great imposter” because its symptoms can mimic, and it is often misdiagnosed as, one of the following: rheumatoid arthritis, lupus, MS, ALS, Parkinson’s, fibromyalgia, and CFS/ME 

- her recommendation that anyone with symptoms related to RA, lupus, MS, ALS, Parkinson’s, fibromyalgia, or CFS/ME also seeks out the assistance of an LLD, or Lyme Literate Doctor, to be thoroughly tested and rule out Lyme as a root cause 

- that band 58 of her Lyme testing was the definitive indicator of her infection 

- the relief and vindication that came with her definitive Lyme diagnosis 

- that Lyme may be one of the worst diseases of all time, BUT it’s curable 

- that Lyme causes autoimmune diseases – which may include her Hashimoto’s disease diagnosis 

- that her current protocol is being undertaken in steps. First, she has to kill the Lyme in her system; next, she has to repair the damage the Lyme has done to her immune system 

- that her doctor recommended stem cell treatment, but it’s very expensive and she finds her current regimen is working well 

- what a fecal transplant (FMT) is, how donors are selected, and how it works – including all the dirty details! 

- that C. diff (Clostridium difficile) is the only infection for which FMTs are currently FDA-approved; so FMTs are difficult to get a hold of otherwise, unless you find a doctor willing to help 

- what distinguishes Bartonella and Babesia co-infections in Lyme 

- how ozone therapy works: using O3, it kills pathogens in your blood on contact 

- the healing process of Lyme: patients tend to get worse before they get better, and the die-off period during which they feel worse (generally flu-like symptoms, because the die-off releases toxins in the body) is called a “Herxhiemer reaction”, or Herx 

- the process of being more “seen” by others since she got her Lyme diagnosis – because her network understands this diagnosis more than they did the previous ones 

- how she has allowed her illness experience to change her for the better: she has learned self-compassion, and to ask for support with acceptance and grace  

Dominique Viel is the founder of InvisiYouth Charity, a 501(c)3 nonprofit organization that helps teens and young adults around the world with varied chronic conditions and disabilities discover empowering lifestyle programs to live full lives while battling illness. A natural progression of speaking engagements she began as a teen in research hospital treatment centers, she launched InvisiYouth in 2015 after years of self-advocacy, having experienced a lack of patient-centered platforms that served to bridge the gap between the medical and non-medical aspects of her life while living with invisible illness. In particular, her focus is on teens – the “older” pediatric patients often overlooked and misunderstood by the medical establishment. She strives to foster greater communication and compassion between these patients and their medical teams, and to encourage teens to find outlets to live creative, fulfilling lives in spite of – but with reverence to – their disabilities. 

Join us as Dominique shares… 

- that she lives with both visible and invisible illness in the forms of: RSD (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome/CRPS), scoliosis, tachycardia, and undiagnosed EDS (Ehlers Danlos Syndrome) with hypermobility 

- that she first got sick a decade ago (right before she turned 16), and RSD ended her competitive tennis career 

- that, like so many patients with chronic illness, she experienced the “revolving door” of specialists, tests, and procedures in the early stages of her diagnosis 

- that she struggled to maintain and keep balance in her life as a high school student with her mounting medical conditions 

- that she taught herself to be ambidextrous as a result of RSD/CRPS 

- that she was apprehensive to try acupuncture and cupping, but had great success with these therapies for managing symptoms of RSD/CRPS 

- that she struggled with chronic illness visibility in college, and transferred schools in her freshman year because of a lack of accommodation 

- that she learned very early on to be her own health advocate, and had an additional early advocate in her mother, who is a nurse 

- that she adapted quickly to new career options because of her physical limitations; her narrative came second to her body’s needs 

- the grieving process of health changes, which accelerated her maturation process because of discussions about mortality 

- that she had no community in the invisible illness world until she launched InvisiYouth at the age of 22; many of her friends either backed off or struggled to understand her conditions because they couldn’t see them 

- the importance of being proactive about your health, rather than reactive 

- that she’s been unofficially diagnosed with EDS – and not officially diagnosed because of the cost and limitations of testing 

- that when she was younger, her lack of ability to explain her conditions made her feel like less of an authority on her own body 

- the lack of disability representation in the media, and how important it is to expand our understanding of representation 

- that the name of InvisiYouth was rooted in her feeling of invisibility being in an older, often misunderstood youth demographic 

- that for the last 7 years she’s speaking publicly at the Children’s Hospital of Philadelphia, addressing doctor-patient communication and responsibilities with particular reference to the teen and young adult community 

- that she structured InvisiYouth to work functionally around her disabilities 

- how she prepares daily and weekly to manage work and life around her symptoms 

- her advice for those with disabilities seeking remote work 

- the importance of meaningfully asking our friends “how are you?” and seeking a truthful response 

- that chronic illness, success, and happiness are NOT mutually exclusive 

- the importance of celebrity disability awareness, and how these individuals can put a face on invisible illness for the masses 

- that she’s now been to 47 doctors, and very few ever asked about how she was feeling – which has impacted her goal to empower both patients AND doctors to better communicate together 

- the importance of owning one’s medical adaptations 

Dr. Akilah Cadet is the Founder and CEO of Change Cadet consulting firm, which offers a broad array of anti-racism and diversity services including strategic planning, crisis rebuilding, advising, executive coaching, and facilitation. Cadet (her last name) is a French term that means soldier. As it's often an uphill battle for BIPOC, women, and historically excluded communities to achieve success and equity in the workplace, Change Cadet prepares soldiers of change to overcome these continuous battles so individuals and companies can thrive. Akilah has 15+ years of experience working in various organizations, with both private and public sector companies. She literally has all the degrees (Bachelor of Science in Health Education in Community Based Public Health, a Master of Public Health, and a Doctorate of Health Sciences in Leadership and Organizational Behavior), lives in Oakland, CA, has a rare heart condition, and is a proud Beyoncé advocate…and has just been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). And on top of all that, she’s the host of the Change Cadet Podcast!

Tune in as Dr. Cadet shares:

• how her early symptoms first manifested
• the truth about accurate diagnosis: “in order to be diagnosed, you have to be misdiagnosed”
• how she was diagnosed with coronary artery spasms, or Prinzmetal’s angina; as well as inappropriate sinus tachycardia, pre-atrial contractions (irregular heartbeat), and orthostatic hypertension
• how she faced her own mortality during the process of being diagnosed
• what her long-term care looks like with regard to heart health: ER visits and the risk of heart attack
• the criteria she holds her care providers to
• why she is still waiting for genetic testing to determine her hEDS type
• how she manages her symptoms day-to-day — and how so much of that management involves clear communication
• what true energy management looks like for her
• why the “ER is nothing but trauma for [her]” — and why healthcare in America is such a mess
• a conversation about the concepts of intersectionality and inspiration in chronic illness and disability identities
• her advice for Spoonies and their loved ones

Lauren brings back a familiar guest: Calliope Tsoukalas, a nutrition and wellness coach based in Los Angeles, CA. Calliope is on the show again not only to go more in-depth about her practice, but also to share her experiences living with one of the most nebulous of invisible illness diagnoses: IBS.

Listen in as Calliope reveals… 

- that she felt more connected to her body at a young age because she grew up with digestive problems and gut pain 

- that diet is 75% of IBS management, but exercise and stress are also major factors – but food is the one potential trigger we can most easily control 

- that, like so many of us, her doctors told her she was fine at first when she knew she wasn’t 

- how the apple cider vinegar fad actually made her symptoms worse 

- that changing habits quickly is unsustainable, and fast elimination can sometimes cause more harm than good – moderation and “slow and steady” are key to success 

- that having a support system is an integral part of making lifestyle changes successful 

- that knowing what DOESN’T work is as important a part of the process as knowing what does work 

- that her current diet isn’t strictly Paleo, but rather a combination of various eating protocols – a unique individual diet she’s designed around her own health 

- that supplements aren’t necessarily a Band-Aid – there is a place for them depending on individual needs, and they can be very beneficial 

- that taking prescription drugs never felt right to her, and she resisted them 

- what tends to work best for IBS patients: small meals frequently throughout the day, not lying down after a meal, and drinking (water) 30 minutes before or after a meal, but not during 

- another key to success: meal prep and having snacks on hand at all times 

- that good quality, healthy food can also be delicious food 

- her endorsement of “mindful eating”, and how promoting relaxation while eating can help remove and reduce stressors, and also assist in discovering food sensitivities 

- that blood tests are most accurate in order to discover food sensitivity tests – which are distinct from food allergy tests, and just as – if not more – important 

- that food sensitivities can wreak more havoc on the body over a longer period of time, because they can have a cumulative effect 

- that she usually sees digestive problems in conjunction with depression, anxiety, and insomnia 

Sarah Belclaire is an art librarian, fine art photographer, writer, and researcher based in Boston. Believe it or not, she and Lauren connected over email when Uninvisible first launched…because, like our first guest Mercedes Yvette, Sarah had lupus! Let’s explain the use of past tense here…Sarah lived with drug-induced lupus for two years – a reaction to medication she was prescribed for a GI issue (and one that was later diagnosed as only a food sensitivity – and cured with diet change). While her lupus has since passed, she lives daily with the long-term side effects of its presence: in the form of dilated cardiomyopathy. In addition, she has a tendency toward chronic migraines bought on by the long-term use of oral birth control. Sarah has had to make a number of adjustments in her daily life as she lives with heart disease, and her avenue to advocacy has been to document her healing from surgery to implant an internal defibrillator. Through photographs in a series called Unmending, Sarah beautifully illustrates the light and shadow of invisible illness – and inspires us all to remember that the only way out is through.

Join us as Sarah shares… 

- that she first got sick about a decade ago, when she was on medication for a GI issue that caused drug-induced lupus 

- that drug-induced lupus was so much more damaging to her health than the original GI issue 

- her surprise (and Lauren’s!) that a medication with such wide-reaching and devastating side effects was a) still prescribed, and b) not monitored closely enough to prevent the worsening of side effects 

- how the side effects of the drug manifested: fluid in her lungs, swelling, protein urea (which affected her kidneys), an enlarged heart, and irregular heartbeat (dilated cardiomyopathy); but luckily – NO nervous system damage 

- that her GI issues were ultimately related to food sensitivity, and were solved with a total diet change – no medications required 

- that she also suffers from chronic migraines – which are related to her long-term use of oral birth control 

- that her recovery from drug-induced lupus took 2 years 

- that she suspects her cardiomyopathy was caused by her drug-induced lupus, even if doctors haven’t yet confirmed this hypothesis 

- that she sought legal counsel when she was diagnosed with cardiomyopathy, but was questioned as to why she waited so long to report the issue (hint: she was healing and being diagnosed!) 

- that she ultimately didn’t pursue legal action against the drug company or against her doctors for malpractice, because it would have been very stressful for her to continually relive the trauma of her illness 

- how she manages her conditions in the workplace 

- that she has to exercise to keep her heart healthy, but she also can’t overdo it – it’s a delicate balance because of her heart issue 

- that there is a possibility she may need a heart transplant in the future; her emotional reaction strategy is to live in the moment as much as she can 

- that she has had an internal defibrillator implanted 

- that she has documented her surgical scarring (as a tool for recovery) in a fine art photography series called Unmending; this experience helped her normalize the healing process because it allowed her not only to express herself, but to return to a comfortable (and comforting) working medium 

- that she’s been fortunate to find a wonderful medical team at Mass General hospital 

- that there is not a culture of compassion in the workplace, but she’s been fortunate to have support for her conditions at work 

- which advocates in the invisible illness world inspire her 

- the need for greater community-building – and access to these communities – in the invisible illness world 

- how she stays active and motivated to exercise 

Kent Holtorf, M.D. is the medical director of the Holtorf Medical Group, and a founder and director of the non-profit National Academy of Hypothyroidism (NAH). He has trained numerous physicians across the country in the use of bioidentical hormones, hypothyroidism, complex endocrine dysfunction, and innovative treatments for chronic fatigue syndrome, fibromyalgia, and chronic infectious diseases, including Lyme and its co-infections. Lyme, in particular, has been the focus of the Holtorf Medical Group and has been a passion of Dr. Holtorf’s – not least because he, himself, lives with chronic Lyme. He is also a fellowship lecturer for the American Board of Anti-Aging Medicine, the Endocrinology expert for AOL, and is a guest editor and peer reviewer for a number of medical journals, including Endocrine, Postgraduate Medicine, and Pharmacy Practice. He has published innumerable studies and papers on his various topics of interest and expertise.

Dr. Holtorf has helped to demonstrate that much of the long-held dogma in endocrinology and infectious disease is backed by evidence that proves it is inaccurate. He is also a contributing author to Denis Wilson’s Evidence-Based Approach to Restoring Thyroid Health. He has been a featured guest on many TV shows, including CNBC, ABC News, CNN, Discovery Health, TLC, The Today Show, and CBS Sunday Morning; in addition, he has been featured in print in The Wall Street Journal, LA Times, US News and World Report, SF Chronicle, WebMD, Health, Elle, Better Homes and Gardens, Forbes, the NY Daily News, and Self magazine – among many others. He joins Lauren on this episode to discuss his work at the forefront of chronic illness and thyroid medicine, medical “quackery” and evidence-based approaches not yet recognized by larger medical organizations, the need for healthcare reform in the US and how this might be achieved, and his own struggles with Lyme, which have greatly informed his methodologies and patient-centered care approach.

Listen in as Dr. Holtorf shares… 

- about being both a survivor of chronic illness (Lyme) and a practitioner 

- how so many medical practitioners who treat chronic illness came to alternative/integrative/experimental treatments because they themselves were once sick 

- that societal guidelines are far more restrictive and often less evidence-based than innumerable anecdotal cases, particularly with regard to chronic diseases like Lyme – and how organizations like ILADS and the Infectious Disease Society of America still don’t even classify Lyme as a chronic illness despite the mounting evidence to the contrary 

- that the fatigue of chronic illness is entirely different from general fatigue 

- that he first went into anesthesia because he was so fatigued, and he knew this field would keep conversations with patients – which were further exhausting him – to a minimum 

- that he started attending “alternative medicine” conferences, and found the studies and practitioners coming out of these events were far more evidence-based than the materials with which he was presented in medical school and in residency 

- that he worked on optimizing his hormones to get well 

- how everyone’s “normal” is different 

- the studies from his Fibromyalgia and Fatigue Centers (FFC), which indicated that most patients saw – on average – 7.2 physicians without improvement in chronic symptoms (current numbers are more like 12-14 physicians without improvement in symptoms) 

- how care in the US has become more segmented, and it’s deteriorating 

- that doctors are the least empathetic group he’s ever seen 

- what doctors are working against: the business model of health insurance (which is tied into quantity over quality, time restraints, and big pharma); ego and self-esteem issues 

- how quickly his work has been dismissed as “quackery” 

- how few practitioners can’t – and often don’t want – to take the time to find the source of chronic and invisible illness 

- the stress connection to health – it can devastate the immune response and be a huge factor in chronic illness 

- that he knew he had Lyme – and his blood was so thick he had to wait months to thin it out in order to properly test it 

- that he used antibiotics for 4.5 years – and would never prescribe them that long for ANY patient 

- that he is a fan of Ozone, LDN, stem cells, and peptides for treatment of specific chronic illnesses, and has used these therapies himself 

- if you don’t fix the immune system, you won’t get rid of the infection; his ethos is root-cause based for this reason 

- his whole life, he was never able to get out of bed before noon. Now, he is much more highly functional 

- the chronic illness cycle of rest and anxiety when you can’t get to sleep despite total body and mind fatigue 

- his take on the opioid crisis: that so many highly addictive opiates have been approved by the FDA because of special interest groups and big pharma 

- the frustrations of the rising cost of medication 

- how the US has the least free-market healthcare system in the world, despite our acceptance of capitalism – and how this is entirely tied to big dharma 

- the frustration of communication between “standard” Western doctors and the more “experimental” medical establishment 

- placebo doesn’t work in chronically ill patients in the same way it does in “well” patients – it’s more of a “no-cebo” among the chronically ill 

- that the sicker the thyroid patient, generally…the more T3 they need (combo therapy of T3 and T4) 

- that doctors are taught to memorize and to segment the body, rather than understanding multi-system symptoms and treatment 

- the cost of chronic illness 

- that Lyme is often misdiagnosed as Parkinson’s, ALS, and MS – among other conditions 

- that his Lyme disease was initially misunderstood as HIV/AIDS because his immune system was so incredibly suppressed 

- that coagulation of the blood is common among immune-suppressed patients 

- that he is in favor of universal healthcare, but fixing our system is not as simple as that – it also requires a free market and reduced prescription costs, as well as a removal of price-fixing among big pharmaceutical companies 

- restrictions on publishing medical studies: even medical journals are funded by big pharma ads, which presents a conflict of interest and some collusion 

- that he encourages healthy, informed debate over angry outbursts