Invisible Not Broken - Chronic Illness Podcast Network – Details, episodes & analysis

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Navigating college with a disability? 🎓🧩 Stop the guesswork. We're chatting with MMeri Scholars' founder about their MUST-HAVE list of truly accessible universities. Parents, don't miss this! 🏫✨

🎧 Listen to Invisible Not Broken: 🔗 in bio.

#CollegeBound #Neurodiversity #InvisibleNotBroken #SpecialNeedsParenting

summary

In this insightful interview, Lisa shares her expertise on college accessibility for students with disabilities, highlighting resources, challenges, and strategies for families and students to navigate higher education inclusively.

keywords

college accessibility, disabilities, inclusive education, college planning, neurodivergence, mental health, college resources, advocacy, higher education, college admissions

Chapters

00:00 Introduction to M.M.E.R.I. and Its Mission

02:51 The Importance of Inclusivity in Education

05:46 Researching Accessible Colleges

08:39 Spotlighting Supportive Colleges

11:39 Identifying Red Flags in College Selection

14:21 Barriers in College Admissions

17:24 The Role of K-12 Education in College Readiness

19:52 Navigating College Applications and Testing

22:47 Blind Spots in College Admissions

25:28 Supporting Adult Learners

28:21 Getting the Guide into Schools

31:17 Conclusion and Resources

Summary

In this conversation, the hosts discuss the challenges and experiences related to accessibility and accommodations in education, particularly for students with disabilities. They explore the differences between community colleges and universities, the bureaucratic hurdles in obtaining necessary accommodations, and the impact of societal structures on access to education. The discussion also touches on the role of technology, the financial burdens of education, and the importance of creating inclusive environments for all students. The conversation concludes with thoughts on the potential of AI in education and the need for systemic change to ensure equity and access for all learners.

Chronic illness is a marathon and not a sprint! Monica (Explicitly Sick) and Jason (Discomfort Zone) talk about how they cope with chronic illness and other life bullshit:

• Finding the people that won't tell you you're crazy
• Pets that both comfort and injure Monica
• Meditating when you can't sit still
• Denial! YES, denial is a perfectly legitimate coping response, and never let anyone tell you otherwise :)

**ALSO, BIG ANNOUNCEMENT: Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at contact@invisiblenotbroken.com with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence.

@INVISIBLENOTBROKEN

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Website/Blog, Twitter, & Instagram Handle

DZonePodcast, DZonePodcast

Name *

Jason Herterich

What is your disorder? *

Fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and irritable bowel syndrome (IBS)

At what age did your disorder become a daily issue? *

22

Who were you before your illness became debilitating? *

An outgoing, energetic, adventurous, driven fourth-year engineering physics student and a varsity triathlete

What would you do if you were not dealing with your disorder and/or disability? *

If I wasn't dealing with my disorder and/or disability, I could be doing any of the following: starting a family, focusing on my engineering career, competing in sports, traveling the world, volunteering with vulnerable members of our society.

What would you like people to know about your daily life? *

I 'live with' pain, I don't 'suffer from' pain. Despite the many challenges my illness presents, my life is very purposeful. There are times when I experience depression, but I'm generally a positive person.

What would make living and moving in the world easier for you? *

It would make my life easier if we could all end the stigma on invisible/chronic illness and mental health. I wish I could talk more openly about these topics without the fear of making everyone around me uncomfortable.

Do you have any life hacks? *

Active decision-making: Periodically throughout the day, I check in with myself to see how I'm feeling physically/emotionally and I make conscious choices about how to use my time/energy. I weigh the pros and cons of each potential decision and select one accordingly. Candlelight hour: An hour before bed, I turn off all artificial sources of light and only use candlelight. (Quick science note: artificial light is more blue-shifted in the light spectrum, which suppresses the production of melatonin. Fire, on the other hand, is more red-shifted, which supports the production of melatonin.) Weighted pen: In the past, I've experienced severe arm pain and have had difficulty using a pen or pencil. Solution: I created a weighted pen by wrapping electrical tape around 4 nails. That way, I can let gravity do more of the work and I don't have to press down as hard.

What kind of support do you get from family or friends? *

I live with my parents. They help me with cooking, cleaning, and other household chores. I have leaned on my sister and friends for emotional support when needed, which isn't very often anymore.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

In 2014, the anesthesiologist told me that he deals with patients who have much worse pain than me and that I should simply return to work. For the first 3.5 years of my illness, my parents and grandparents were either skeptical or in denial of the existence of my symptoms.

How has your chronic illness affected your relationships? *

Before becoming ill, I loved group gatherings with friends and meeting new people. Since developing my illness, I can't handle large groups of people. I mostly get together with friends 1-on-1 and do low key things like go for a walk, drink tea, sit around and talk, or play board games.

Is there anything you are afraid to tell people in your life? *

Not really. I've talked openly with my loved ones and on my podcast about how I used to experience suicidal ideation. I don't shy away from difficult conversations if I think that doing so could be fruitful.

What is your best coping mechanism? *

Walking in nature

What are you the most concerned about and the most hopeful for in the future? *

I'm most concerned about whether or not I'll be able to return to a full-time career, live an independent life, and have children (if I decide that's what I'd like to do). I'm hopeful that, over time, I'll find a deeper sense of purpose in my work as I become more involved with advocacy efforts for persons with chronic illness and disabilities.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

If you'd like, we can chat about my dad dealing with a potential case of COVID-19 after returning from Cuba in early March. (Note: he actually tested negative, but the head of Neurology at a major Toronto Hospital suspects that he was a false-negative. He nearly required hospitalization at his worst) Promoting my podcast, Discomfort Zone - a show on what it's like to live with an invisible and chronic illness. I explore how I developed chronic pain, the daily realities I currently face, and the uncertain road that lies ahead. This podcast stars myself, family, friends, and other members of the chronic illness community. www.discomfort.fm Social media handle: @DZonePodcast I'm also an advisory member for D-Next Accessible Media Lab, an emerging lab that is led and run by a creative team of new media artists, filmmakers, journalists, and advisory members with disabilities. We are dedicated to producing authentic underrepresented portrayals of people with disabilities in the mainstream and social media, told through a nothing for us without us lens. https://www.cilt.ca/d-net-project/

What makes you energized or enthusiastic? What drains you?

I am energized by listening to peoples' stories, telling my own, and connecting with the chronic illness and disability community. I'm drained by conversations involving politics, hate-filled speech, ableism, racism, and sexism. I dislike conversations that divide us as a society. I also don't watch any cable news.

Any favorite books or shows?

I mainly consume podcasts! Radiolab, Snap Judgment, Heavyweight, White Coat Black Art, and last, but not least, Invisible Not Broken :)

What is the hardest and/or best lesson your condition has taught you?

That regardless of the situation I find myself in, my energy is best spent by focusing on "How do I make the most of things?" NOT "What could have gone differently?" Also, it's OK to accept help.

What is the best purchase under $100 that helped your life

Earbuds! I listen to podcasts for hours every day, I definitely got my money's worth

iMovie, CoVid rap, chronic illness, chronic illness and travel, chronic illness and CoVid, Chronic illness and life choices, chronic illness and travel,ME, Fibromyalgia, chronic illness podacst, DiscomfortZone, Jason Herterich, Monica Michelle, Invisible Not Broken, Explicitly Sick

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Trigger Warning: In our discussion we discuss: PTSD, Depression and suicide

International Hotlines

1-800-273-8255 National suicide prevention hotline with messaging

Resources

The Red Badge Project

Website/Blog, Twitter, & Instagram Handle

https://kathryntrueblood.com/

Name *

Kathryn Trueblood

What is your disorder? *

Crohns Disease and Graves Disease

At what age did your disorder become a daily issue? *

45

Who were you before your illness became debilitating? *

An over-functioning wife of a depressive man while raising two children with special needs and teaching full-time as I climbed the career ladder and maintained the family's health insurance.

What would you do if you were not dealing with your invisible illness? *

Go hiking and backpacking and dancing.

What would you like people to know about your daily life? *

Even though I manage the regular workweek (in part because I can work from home when I am not teaching), I spend every weekend out of remission and/or in pain. Then it is time to get up and do it again Amen.

What would make living and moving in the world easier for you? *

The ability to work part-time.

Do you have any life hacks? *

Yes. In your day planner, write down anything you do that is restorative to you as an appointment, be it a pedicure or a yoga class or a walk with the dog. Use your initials, if you like. That way, you won't give away your time for yourself. When people look over your shoulder, they see that these spots are already spoken for, and don't start suggesting times and dates. Same goes with your Outlook Calendar.

What kind of support do you get from family or friends? *

My husband will always rub my back, even in the middle of the night. He is the most compassionate person I know. My best friend will talk through anything will me and she takes me to any procedures or surgeries I need when my husband is our of town.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I have had colleagues express anger, resentment, and envy when I was on a part-time medical leave. I've heard them say, "Well, you look fine." One colleague actually said, "Well, if it's not one thing with you, it's another." That one stayed with me.

How has your chronic illness affected your relationships? *

When I am out of remission, I tend to isolate myself. Partly because I am exhausted and partly because I don't want people to see me when I am ill or in pain. In my last work promotion file, I was very candid about why I had two part-time medical leaves and how illness has affected my outlook. I began working with veterans after my illness in 2007, offering them storytelling workshops through The Red Badge Project because I felt their isolation and I believe in the healing power of telling stories. My illness has made me willing to be vulnerable and candid with people, to sit with their pain, and vets love dark humor.

Is there anything you are afraid to tell people in your life? *

Yes, that when I get worn down by pain, I sometimes think about jumping off the Deception Pass Bridge. It is more a fantasy than a plan, but in the fantasy I perceive that moment as very liberating, to leap into the air and be carried by the tides. Just so you know, I have had two immediate family members attempt suicide and I would never inflict that kind of pain upon my loved ones, nor would I want to increase their likelihood of making an attempt later in life.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I don't think so. I have a pretty solid team.

What is your best coping mechanism? *

Meditation, yoga, and soft-serve ice cream. Having a session with the family dog!

What are you the most concerned about and the most hopeful for in the future? *

I am very concerned about the lack of social services and healthcare for so many who are suffering from chronic illness in this country. I am hopeful because Americans are innovators and I believe we can turn global climate change around. I believe in the kindness of people because my experience has shown me that most people are kind.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd like to talk about parenting while chronically ill, from the children's perspective as well as the parent's. I was inspired to write the book because I could not find what I felt were honest representations in fiction or non-fiction.

What is the hardest and/or best lesson your condition has taught you?

The hardest? I could no longer use my tremendous will power to over-ride my body. I had received an overdue notice from God (!), and it was time to pay attention. The best? How deeply love abides, how durable it is.

What is the best purchase under $100 that helped your life

A Samsonite business case on wheels.

Any questions you think we should add to this list?

How do the protagonist's children respond to her diagnosis of Crohn’s disease? Do their coping strategies change throughout the book?

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What is your disorder? *

Thoracic Outlet Syndrome (& IBS, Anxiety)

At what age did your disorder become a daily issue? *

21

Who were you before your illness became debilitating? *

I was ridiculously busy lol! I had just finished my university degree (Bachelor of Fine Arts) and was working full time as a charitable fundraiser. I had also moved from the east to west coast of Canada and had plans to travel and backpack around the world with my previous partner.

What would you do if you were not dealing with your invisible illness? *

I would love to work again haha as lame as that is! After my pain became more chronic, I started running live painting events in Victoria & Vancouver BC. It accommodated the pain since I could mostly work from home, while I was trying to get an accurate diagnosis. As my pain became worse though & I received the TOS diagnosis, I had to make some changes so, I left a job I loved. I also am a painter with arm pain lol the irony is real, so I haven’t been able to make as much art as I’d like to over the past few years. Or be as social as others my age (especially with being sober for health reasons too oy). In the future I would love to maybe do a Masters in Fine Arts, or even become a tattoo artist!!! But it’s mostly up to my body at this point, which is really hard to plan around.

What would you like people to know about your daily life? *

It’s really difficult & chronic pain is painfully consistent. For years I was misdiagnosed and brushed off since my symptoms are invisible. I had so many scans and tests done but they were all normal. I saw countless specialists who said they couldn’t help me, and tried every possible painful treatment with no success. It really felt like I was going to be in pain forever. I had to keep advocating until finally I was diagnosed with a rare illness, but there’s no cure. I felt alone for a really long time and have lost a lot due to illness, so I just want others to know that it’s okay to not be okay! Your pain is 150% valid and just keep trying to take care of yourself the best you can.

What would make living and moving in the world easier for you? *

Less pain in my arms! Thankfully I recently had major surgery which has really helped my symptoms! In the past six months I’ve had both my first ribs removed to alleviate the compression of the nerves and veins that go into my arms. There was no guarantee it would help, but my recovery has actually been really great! Super painful lol but impressively worth it! After years I finally have some relief. Now I just have to focus on continuing to recover and try to regain what I’ve lost while also not overdoing it. Easy right?lol

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I am beyond excited for you to listen to this interview with Emily Guy Birkin. Being sick in any country is expensive. No matter where you are there is time off work and a lowering of energy. A new chronic illness or disability diagnosis can be terrifying for so many reasons but one of them might be something you can control and prepare for, financial.

Emily and I will cover some of the ways to budget with fixed income, tools for what to do if you are still working, and ways to financially protect yourself and your family.

If you would like to know more about Emily please visit her website.

Financial Apps We talked About:

Mint

Acorn

WealthFront

Financial Planning as a caregiver: Estate Lawyer

Roth IRA

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Raquel Hellenga is a Life and Business Coach for entrepreneurs and creatives with chronic illness. Diagnosed with juvenile rheumatoid arthritis as a child, she has had chronic illness for over twenty years. She has an undergraduate degree and Master’s Degree in Organizational Communication and is a proud member of the LGBTQI+ community. Her practice involves working with people one-on-one to help them build sustainable businesses that work with their chronic illnesses, not against them. In this episode, she tells her story learning to accept her chronic illness and how it helped her find her path in life. She discusses the importance of mindset and how you can learn to own your illness and work with it to build the life you want. Her message to fellow spoonies is one of compassion and hope.

Visit: www.raquelhellenga.com

Time Stamps:

4:20 – Her diagnosis of juvenile rheumatoid arthritis

5:35 – How accepting our limitations is the gateway to the business and lives we want

6:58 – The year she was diagnosed

7:16 – How her diagnosis affected her family

8:18 – On her pediatric rheumatologist

9:10 – On bullying by other girls

10:07 – The importance of exercise and chronic illness

10:35 – Her temporary remission in her teens

15:06 – Admitting the long-term nature of her illness in adulthood

15:32 – Her decade of doubling down and fighting the truth of her illness

16:21 – Her work as an adjunct communications professor that led to burnouts and flares

16:55 – The effect of auto-immune disease

17:33 – Her realization that she physically could not continue her current path and how it led to her business

19:45 – Baby Yoda

20:33 – Her career as a Life Coach for chronically ill creatives and entrepreneurs

21:14 – What Hellenga does vs what she doesn’t do in her practice

23:28 – How she helps her clients

25:23 – The importance of being honest with ourselves about how to be successful without being in constant flare

26:51 – Stories of people she’s worked with

28:21 – Denial and chronic illness

28:50 – Admitting chronic illness to take ownership of it

31:03 – Unlearning people-pleasing

32:05 – Advantages of being chronically ill

32:49 – The value of a willingness to be misunderstood

42:25 – Coaches vs consultants

52:50 – The value of taking breaks from personal development

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Important Note:

According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008. 

 As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.

RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.

Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.

1. Financial Cost:
   1. Repeated trips to the doctor each with its own co-pay.
   2. Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. 
   3. Tests after tests.
   4. Experimental procedures, not usually covered by insurance
   5. Second opinions
   6. Cost of prescriptions, even with insurance can be excessive. 
   7. Cost of medical supplies, over-the-counter meds, and medical equipment.
   8. Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.)
   9. Taking a lot of time off work for all of these doctor appointments.
   10. Loss of income if you cannot work / cannot keep a job.
   11. Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance.
   12. Therapy for self and family
   13. Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers,
2. Physical Cost:
   1. Harder time accessing help because people don’t believe you need it.
   2. Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool)
   3. Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.)
   4. Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards
   5. Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc)
   6. Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?)
   7.  
3. Emotional Cost:
   1. Conscious / unconscious need to act like nothing wrong, even on bad days.
   2. Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job.
   3. Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it.
   4. Strain on relationships when others have to do more because you cannot.
   5. Self loathing from needing someone to take care of you
   6. Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness
   7. Isolation and loneliness from being home all day while friends and family are at work. 
   8. Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go.
   9. Depression 

Links:

1. https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html
2. https://themighty.com/2016/12/cost-expenses-having-chronic-disease/
3. https://www.pinterest.com/pin/295267319303446311/
4. http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/
5. https://www.sciencedaily.com/releases/2012/09/120911091100.htm
6. http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll
7. https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
8. POV about costs from a woman in England: https://www.youtube.com/watch?v=qhnZVjEQKSM

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Life can be full of kismet. I just started doing live recording on ZubiaLive about chronic illness and trying to live a life and the site wanted to connect with LinkdIn. I have not been active on LinkdIn since I was a photographer. So I did my best to create a decent profile for Invisible Not Broken Podcast. In less than an hour I had gotten a lovely email from a Pain Management Doctors PA. who also has Ehlers Danlos Syndrome. A fellow zebra who knows things from the other side of the stethoscope? I grabbed her for an interview the very next day!

I had some other things to post but this is far too important. If you want to skip right to the point on pain management lists and what to do or say to have a better emergency room experience go to minute 26 and keep listening. We meander a bit but you will get what you need. If you have the time listen all the way through. This woman has a way of breaking things down and doctor PTSD might be my new favorite phrase.

Links

Ehlers Danlos Syndrome

CSF Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

CURE

Regan Era Mental Health Policies and California

Links

Ehlers Danlos Syndrome

CFS Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

Website/Blog, Twitter, & Instagram Handle

MypainIQ.com (in progress), twitter: @brianna3207, IG:@Brianna_pa.c

What is your disorder? *

hEDS, spinal CSF leak, POTS, dysautonomia

At what age did your disorder become a daily issue? *

26

Who were you before your illness became debilitating? *

13

What would you do if you were not dealing with your invisible illness? *

Probably would still be chasing happiness and continuing my negative self- talk

What would you like people to know about your daily life? *

It's hard! The suff most people take for granted is often a really big deal if I can accomplish it that day! Also my degree of functionality is not by accident. I literally spend hours a day doing PT, meditation, organic, GF, non dairy meal prep, etc.

What would make living and moving in the world easier for you? *

If more people were kind to each other! And if healthcare providers werent held hostage by insurance, treatment would be so much more timely and competent

Do you have any life hacks? *

Lots of pain hacks (a whole other interview's worth!), kindness, medical form for the ER (I'll send the word doc), meditation

What kind of support do you get from family or friends? *

Amaaaazing support from my hubby. My brother is awesome and so are my parents/ inlaws. I have a great employer and solid group of friends

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

All the time! The time the ER doc said I didn't have EDS bc my skin wasn't stretchy enough. And my patients dont believe how sick I am

How has your invisible illness affected your relationships? *

Yes, but for the better. I am kinder to myself, surrounded by more genuine and accepting humans, and the toxic/superficial people have sashayed away!

Is there anything you are afraid to tell people in your life? *

I think I'm afraid that people can't handle deep convos about morality and disability.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes! I essentially have to prove how sick I am

What is your best coping mechanism? *

Meditation for the mind, cannabis and exercise for the body

What are you the most concerned about and thehopeful for in the future? *

I'm concerned about the lack of treatment for my fellow zebras, but I'm hopeful that I can help change that!

What is your favorite swear word?

Fuck!

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Gender bias in medicine, opioid hysteria negatively affecting pain patients, cannabis as a viable alternative

What is the hardest and/or best lesson your condition has taught you?

I've learned to view each day as a gift!

What is the best purchase under $100 that helped your life

My journal!

CURE

Regan Era Mental Health Policies and California

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