Uninvisible Pod with Lauren Freedman – Détails, épisodes et analyse

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