Stay ConnectedThe podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain.
“Explicitly Sick Podcast” with Monica Michelle + “[Human]care Podcast” with Eva Minkoff
Be Kind. Be Gentle. Be A Bad Ass.
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Summary
In this conversation, Maggie Bushway shares her experiences as a child with brain cancer and the impact it had on her life, family, and friendships. She discusses the importance of autonomy in medical decisions, the role of writing in processing emotions, and the challenges of managing chronic illness while pursuing her passion for writing. The conversation also touches on the dynamics of friendship during illness, the journey of writing a memoir, and the balance between social life and work amidst health challenges.
Takeaways
Maggie felt included in her medical decisions, which empowered her.
Autonomy is crucial for children facing health challenges.
Friendship can provide both support and normalcy during illness.
Writing serves as a powerful tool for emotional expression.
Reading her father's blog helped Maggie process her past.
Maggie's early writing experiences laid the foundation for her memoir.
Journaling can be a helpful starting point for aspiring writers.
Managing chronic illness requires careful scheduling and prioritization.
Finding humor in difficult situations can aid in coping.
Creative expression can take many forms, including fiction.
Keywords
Maggie Bushway, childhood illness, memoir, writing, chronic illness, friendship, family dynamics, emotional processing, creative expression, support
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Twitter @ashlee_hope98,
instagram @ashlee_hope
What is your disorder? *
Prior sudden cardiac arrest (cause unknown), scleroderma, hypothyroidism, migraines/cluster headaches, plus depression, anxiety, PTSD, and in diagnostic for ADHD
At what age did your disorder become a daily issue? *
18
Who were you before your illness became debilitating? *
An athlete, top-level student, very active and fit
What would you do if you were not dealing with your disorder and/or disability? *
Basic exercise, writing things by hand, probably still be an athlete
What would you like people to know about your daily life? *
I do not look disabled. People who see me would likely think I am just exaggerating when I say that I can’t take the stairs or I can’t go for a long walk. There are things people do every day that they take for granted that I can only do because of medical management.
What would make living and moving in the world easier for you? *
I am fortunate to be mobile and rarely need occupational aids, but I do require elevator accessibility and seating availability because medical management can’t do everything.
Do you have any life hacks? *
Cursive instead of print. It’s faster so I can write more down before my hands give out.
What kind of support do you get from family or friends? *
My best friend is the most supportive person I have ever met. I’m also part of a support group for SCA survivors, both locally and internationally. My parents are supportive in helping me manage my health but aren’t entirely convinced that I can adopt the label disabled.
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? *
I haven’t had doctors outright not believe me, but I have had them push off some of my concerns as exaggerated or unnecessary. This happened with my electrophysiologist about my ability to get around campus, and with my rheumatologist about my back and knee pain.
How has your chronic illness affected your relationships? *
I haven’t had any romantic relationships since prior to becoming disabled but I have found myself becoming nervous about engaging with someone like that because I have a visible medical device under my skin, and my inability to engage in exercise makes me appear lazy and negligent of my health.
Is there anything you are afraid to tell people in your life? *
I really don’t talk about what happened to me with my parents at all. They are of the attitude that it happened and it’s over so I should let it go, but it still heavily impacts me.
What is your best coping mechanism? *
Therapy. I also have an ESA.
What are you the most concerned about and the most hopeful for in the future? *
My biggest concern is being able to get affordable insurance once I am no longer on my parents’ plan. I am most hopeful about the direction the general opinion on healthcare seems to be going and that these things will become easier, if not universal.
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 specifically want to talk about the lack of psychological care for survivors of near-death conditions like SCA.
Any favorite books or shows?
I love Brooklyn 99.
What is the hardest and/or best lesson your condition has taught you?
I cannot do the things I could do before. I used to be athletic and active and I simply cannot be that person anymore.
What is the best purchase under $100 that helped your life
Heated blanket.
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“Give yourself permission to cope however you want to cope…no judgment necessary” – Jodi Taub
Jodi Taub is a psychotherapist with a private practice in NYC. She is a specialist in chronic illness and is a chronic illness warrior herself. Her first episode on Invisible Not Broken was called “The Emotional side of chronic illness” (Jan, 2019).
In today’s episode we dive into Jodi’s personal and professional journey as a very high-risk patient with Primary Immunodeficiency.
We talk about coping – both internally and externally - during this acutely difficult time in history, and we cover a number of related thoughts like fear, gratitude, judgement, life-risk, behavior change, trauma, and more.
Emotions are running high, everyone. But we can get through and we can do so together (even when we cant physically be together).
Stay safe. Stay home. Stay well.
(Trigger warning: we talk about PSTD, loss, trauma, war, etc.)
@JODITAUBTHERAPY (ON FACEBOOK)
Eva’s personal coping tactics:
My coping: Being in control of what you can
· ROUTINE (Stretching and “body-feels” Special coffee; Review “schedule”) for Wellacopia, podcast, chores, workouts
· TAKING WALKS! Avoiding Cabin fever and being present (but safe) outside
· Makeup and dressing - even if no one sees me! Makes me feel good.
· Being in touch with the reality to an extent – read the news every day, talk to my friends about how they're feeling
· Projects I have been putting off (organizing a photo album)
· Meditation
· Writing in my journal
· Games with friends (via Zoom)
· Staying fit (live and recorded online videos)
· Cooking experimentation (made a vegan gluten free lasagna!)
· Conscious time with my husband - #1 coping strategy. Very grateful for his support.
· Watching “Friends” again. Always makes me happy!
· PODCASTS! “Practicing human with Cory Muscara”, “Happier with Gretchen Rubin”,
· Funny things: “coronials”, toilet paper memes, quarentinis
· ZOOM PARTIES!
· Gratitude journaling: toilet paper, comfy clothes, HEALTH HEALTH HEALTH despite being in more pain, parents
➡️ visit https://www.joditaubtherapy.com
@joditaubtherapy (on Facebook)
SHARE 😍
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➡️Watch the video version of this interview
(Disclaimer: all content based on personal experience and research and should not be taken as medical advice)
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👉 Check out more episodes like this on Invisible Not Broken
👉 Read and watch more content (or submit your own) on the #Wellspo blog
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In the last year for Invisible Not Broken:
Our top episodes:
+
*Favorite of Monica’s Episodes: Seraiah: Being Trans and Having Chronic Illness: Ehlers Danlos
*Favorite of Eva’s episodes: The Need to Humanize Healthcare: Stephanie Tait (Part 2)
Coming up In 2020
2020 Personal Favorites:
Favorite Books
Favorite Shows
Favorite Podcasts
👉 read and watch more content on https://invisiblenotbroken.com/
👉 match with your ideal practitioners on https://Wellacopia.com
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Find ways to show up intentionally for your right now life, and don’t lose yourself to “someday when.” - Stephanie Tait
Website: stephanietaitwrites.com
--> Her interview on The Today Show
What is your illness(es)?
-I had Lyme disease and other co-infections for 15 years before they got it correctly diagnosed. As a result I have permanent heart damage, permanent neurological damage (causing a variety of symptoms including an intermittent tremor, neuropathy, balance issues, aphasia, memory problems, chronic fatigue, anxiety, and more,) epilepsy, arthritis, and a variety of immune dysfunctions.
-I also have Complex Post Traumatic Stress Disorder (C-PTSD) stemming from childhood trauma but exacerbated by some additional trauma I experienced later in life.
How did your illness shape your career?
- I am an author and speaker. Earlier this year I released my first book, The View From Rock Bottom, in which I advocated for a deeper and more robust Christian theology of suffering, grief, and lament.
In essence, my career sprung directly out of my illness. I tried for many years to hold down a number of “traditional jobs” as people would think of them, but every time I ended up either let go or I had to quit - because my health would make it all but impossible to show up consistently and keep up with my work. Eventually my health got to the point where I spent a lot of time effectively bedridden, which was really difficult for a super extroverted personality like me. I started relying on social media as a tool to connect with the outside world and to seek relationship with others. I’m a natural over-sharer, so I would end up sharing a lot of details of what was happening with both my health and with the financial struggles that my healthcare costs (and inability to work) created. I never really set out to “grow a platform” as people call it, it just sort of happened organically out of my attempts to share my stories and connect with people while stuck in bed. Eventually I started a lifestyle blog, because that was one of the clearest avenues at the time for a woman with a social media following to try to monetize that platform and support themselves. But after a couple of years it became pretty apparent to me that I didn’t want to have to keep playing the blogger game, in terms of generating Pinterest worthy content to supplement the important writing. I started pitching more freelance articles to more serious outlets, and took a number of jobs as a public speaker. An attendee at one of those speaking jobs ended up being the connection that introduced me to a publisher, and ultimately led to my book deal.
- Ironically though, as much as my career sprang directly out of my illnesses, it is those same illnesses that have been the biggest catalyst to growth in that same career. My body already struggles with the small amount of travel I do right now, it make it hard to book a lot of better speaking jobs in other locations. My neurological problems can make it hard for me to write on many days, so my work schedule can be super unpredictable and I often find myself overwhelmed with how behind I feel. Because of my immune dysfunctions, I get sick constantly, especially in the winter, which provides additional challenges as well. I have so many big goals and ideas and ways I’d like to grow my career, but the two biggest challenges to that are my health, and the financial difficulties created by the enormous cost of my healthcare.
What makes your mission as an “influencer” unique?
- I’m an open book, with virtually no division between my public and private life, which makes me a pretty big anomaly not just in the world of internet personas, but more specifically in the Christian author/speaker world. For Christian women especially, there is a particular “type” of woman you generally see writing and speaking, and I’m pretty far from the stereotype in just about every way. I’m politically liberal, I share candidly about my struggles (whether that be my physical health, my mental health, our finances, or whatever they may be,) and I lack the polish and branding you would usually expect. I don’t have a clearly defined “niche” with my work, and have resisted any attempt to streamline myself into one specific label at the expense of other areas I want to speak into. I get into trouble a lot because I’m unwilling to edit myself or my stories to make audiences more comfortable or to make myself more appealing to the market. But I think that’s exactly what people respond to most in my work: so many of us are tired of the branded and inauthentic world of influencers and “thought leaders,” and we’re craving something different. Something shockingly real. Something we can relate to.
What’s your latest project/post/feature that you are most excited about?
My book just came out back at the beginning of August, and I’m really REALLY proud of the work I did there. That book was essentially 3 years worth of work, sweat, and tears (SO many tears,) and it’s been amazing to see the responses I’m getting from readers, and the conversations the book has inspired.
What are you most passionate about in regard to your work/helping people?
- I want people to learn how to show up completely for their lives RIGHT NOW TODAY, and not wait for “someday when.” Too much of our lives are wasted on the “someday when” lie. “Someday when” I get better, “someday when” I’m out of debt, “someday when” I have a spouse or kids or that career goal or I can buy a house or whatever the arbitrary line of “then I’ll have arrived” looks like for us - THEN I can allow myself to do all these things I want to do. THEN I can let myself have more than bare minimum survival. THEN I can be happy. Except “someday when” is a lie. Sometimes those goals will never happen for us. Sometimes they work out, but we are surprised to find a new “someday when” pop up in its place. And in the end, we lose years of our lives chasing the “someday when,” instead of allowing ourselves enjoyment today.
How do/did you handle flares while working?
-Poorly? (lol) But seriously though, I’m the worst. I have a downright predictable tendency to dramatically overdo it the *second* I have a little bit of energy, and then find myself paying for it for days or weeks afterwards. One of the things I’ve learned in trauma therapy is that for many of us with chronic illnesses and/or disability, we tend to disconnect ourselves from our body’s signals as a survival mechanism. In order to keep up with even the bare minimum demands of life, we often have to train ourselves to ignore our body’s signals of pain, fatigue, etc. The problem is that the more we disconnect from those signals, the more difficult it can be to register ANY of our body’s cues. The biggest component of trauma therapy for me has been learning tools for better embodiment, trying to connect my cognizant brain back to my physical body, so I can pursue a healthier sense of wholeness. I’m still learning, and there are years and years of unhealthy habits to unwind, so I would be lying if I said I have it all figured out now. But I’m trying to create more intentional routines of rest, and learn how to respect my body’s limitations without shame or guilt. I’m also trying to advocate for myself better with outlets I write articles for or places that ask me to come speak. That can look like asking for longer deadlines to build in more cushion, or requiring speaking gigs to pay for an additional overnight hotel stay either before or after the event so that I can space out the work from the travel to give my body a better chance of managing it all.
If you had one message to send out to every chronic illness warrior out there, what would it be?
- Find ways to show up intentionally for your right now life, and don’t lose yourself to “someday when.” Ask yourself, what would it look like to find happiness, purpose, fulfillment, and even joy in your life as a chronically ill/disabled person? Let yourself have more than just survival mode. You deserve happiness now, not “someday when” or even if you can get all the right ducks in a row.
Why do you think the patient-practitioner relationship is important?
- Because many MANY illnesses don’t have a simple test with an easy yes/no result to read, they require a practitioner to really listen to their patients to get a clear picture of what’s going on, and more important to believe us. Too many healthcare providers are dismissive of the symptoms their patient’s are describing (especially when those patients are women and/or people of color,) and are quick to assume it’s all in our heads if the tests can’t point to a simple answer.
What does “trust” mean to you in the patient-practitioner relationship?
Believe us. Reaffirm us. Validate us. LISTEN to us. And then treat us the way you would want to be treated in our shoes. Trust is earned by the way respect us, not simply by giving us the correct tests or treatments.
Links from the show:
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Self-care is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no judging Jefferson Airplane We Built this Cityis on mine. ok judge, if it makes you feel better.
Jigsaw Puzzle (Is wear it calms my ADD brain) Click if you think for a minute I was going to leave Dr. Who out of this. Favorite Dr. Who quote? "You know that in 900 years in time and space I've never met anyone who wasn't important before." Seriously if you have never watched it almost counts as an antidepressant for me. Streaming on Amazon Prime.
Walks or just sunlight. If stuck in bed pick the part of you that can move and do.
Make something art, music, the worst poetry in existence. Just make something. This Neil Gaiman speech is well worth your 20 minutes.
If you are a Holiday sort of person decorate your nightstands or make a warm cinnamon drink.
Take a class
YouTube
Pack meds.
Call ahead and make sure there is a quiet space just for you
Bring food you can eat if anyone gives you attitude you can always explain in great detail what will happen if you eat their food trust me you will never have to explain again.
Lower your standards. Say it with me 'I am not Martha Stewart. I am not Joanna Gaines.' These are lovely talented women who have help, so much help
The phrase 'No.' This magic word has so much power that usually toddlers wield it. It is your turn. Will people be disappointed? Only the asses.
I am going to give you the magic phrase that separates the merely ignorant from the jerks 'I have blank I can spell it if you would like to look it up. Currently, I am only accepting advice from my health care professionals but thank you for your concern.' If they persist hide in that quiet room you asked for.
Remember You know your body and your mind take care of them in a way that suits you best, I'm closing with the advice of one of our listeners.
— C{Andy} cane 🍭
So that's it. If you 'have more tips I will leave the comets open or tweet @invisiblenotbrk. Share this with family and friends Give the gift of kind comments on Itunes and until next week
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https://georgiana3026.wixsite.com/mybeautifultr: website
https://twitter.com/mybeautifulTr
/https://www.facebook.com/mybeautifulTr/
https://www.facebook.com/groups/mybeautifultrauma/
What is your disorder? *
SLE Lupus, Fibromyalgia, Hepatitis B, Neurological Functional Disorder, Stroke
At what age did your disorder become a daily issue? *
12
Who were you before your illness became debilitating? *
Youth Worker
What would you do if you were not dealing with your invisible illness? *
An active member of the community Urban Vision, while being a Youth Worker
What would you like people to know about your daily life? *
My health is not reliable (i have good days but bad, I get sick easily and fatigue levels can come and go without warning)
What would make living and moving in the world easier for you? *
Being able to work from home (Which I started this year) Also not having illnesses
Do you have any life hacks? *
Stay Positive, even when it's hard too
What kind of support do you get from family or friends? *
Emotional, Love and travel
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've had strangers who want me to move so they can sit, (when I don't take my walking stick, which I only use when I'm tired and Lupus is flaring up).
How has your invisible illness affected your relationships? *
I can't commit to doing everything and anything
Is there anything you are afraid to tell people in your life? *
Nope, I try to be honest about my life as it's been filled up with challenges
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Yes, my careers hours has been dramatically decreased, and travel costs are no longer part of my career taking me to appointments and regular blood tests when I am sore and tired we have to walk.
What is your best coping mechanism? *
laughter and surrounding myself with loved ones
What are you the most concerned about and the hopeful for in the future? *
That I get seriously sick
What is your favorite swear word?
Fucking Hell
What is the hardest and/or best lesson your condition has taught you?
It's ok to put yourself first, so you can be there for others
What is the best purchase under $100 that helped your life
meds
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Thank you!Anyway, Here are some resources for the podcast notes!-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)
-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/
-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/
-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment
-comingoutasnonbinary.tumblr.com
-blog about chronic illness: chronicill on wordpress or chronc-ill.tumblr.com
-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)
-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/
-an answer to common questions:
https://everydayfeminism.com/2015/08/trans-questions-201/
-a video to explain the term nonbinary to kids:
https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380
-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4
-also a fellow podcast! How To Be a Girl
-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/
-Chronically Fully Sick in Facebook
-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/
-article about talking to a trans person etiquette:
https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/
-PDFs of a book about gender:
https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html
What is the best purchase under $100 that helped your life
CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)
-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)
-Electric Heating pad (I got this a long time ago but I believe it was $20-30)
What is your disorder? *
fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety
At what age did your disorder become a daily issue? *
8
Who were you before your illness became debilitating? *
Same person I am now? Maybe more confident in my ability to do multiple things in a day.
What would you do if you were not dealing with your invisible illness? *
Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.
What would you like people to know about your daily life? *
My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.
What would make living and moving in the world easier for you? *
Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.
Do you have any life hacks? *
Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.
What kind of support do you get from family or friends? *
I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.
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? *
Yes
How has your invisible illness affected your relationships? *
I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.
Is there anything you are afraid to tell people in your life? *
How much pain I’m actually in and how long it actually lasts
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.
What is your best coping mechanism? *
writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)
What are you the most concerned about and the hopeful for in the future? *
I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.
What is your favorite swear word?
Fuck
What is the hardest and/or best lesson your condition has taught you?
Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.
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Emily Joyce CW Analytical Laboratories VP business development
Monica Michelle Podcaster, Children's Book Writer and Illustrator, and EDS, POTS, MCA, Fibromyalgia, and chronic pain patient and medical marijuana user.
What does a lab do for medical marijuana?
Jessica Peters of Moxi CBD rich tinctures now out of business because of Santa Rosa fires. Keep an eye out for her next business venture. Came to medical marijuana for her endometriosis becoming non-symptomatic after her use of marijuana
Jessica has worked at Harborside Medical
If you want people lowering their opioid use don’t make medical marijuana costly or difficult to get and other tales of common sense
Taxation and not having the ability to use insurance means at least for Monica Michelle not being able to afford medication when taxes are more than the product
Pediatric medical marijuana with seizure disorders and the parents who become medical refugees to get their children medicine that WILL NOT kill them.
CPS issues with medicating children with Medical Marijuana. By the way, information by the government on what is or is not allowed by the CPS was VERY hard to find.
A miracle cure? Might be if we could take it off schedule 1 to LEGALLY study all aspects of a plant that has NEVER caused an overdose death.
Unravel the medical mystery of THC CBD and the rest of the alphabet soup
You thought THC was just for fun….hang on and have a listen
So marijuana is legal right? Hang in and listen to what it means to be a schedule 1 substance (If you have listened to this far can we at least all agree that this is not a plant with ZERO medical benefits).
What happens when you run a business that is legal in certain states but is ILLEGAL in the United States hint no insurance, no write off and no business bank account. Just think what happened in the Santa Rosa fire to farmers at harvest time.
Who benefits when people can grow their own medicine? Any guesses?
Why are Pharmaceutical companies investing research into medical marijuana?
What happened when the people who need the medicine the most are on disability and do not have extra money to buy their medical marijuana but hey the prescription drugs are $5 to $10 with insurance.
What we can do to help people get their medicine. It will be grassroots and it will come down to all of us to create change
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Her daughter is on the autism spectrum, ADHD, and childhood Clinical Depression. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.
Her son has NF needing constant wheelchair and g tube. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.
How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to Orange is The New Black .
We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went Dr. Who and Neil Gaiman's Neverwhere but Elana is using Stranger Things. We are geeks We are fine with it.
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Thank you!What is your disorder? *
NF1, Mood Disorder, Essential Tremor (Me). ASD, Mood Disorder (DD), Epilepsy, Epilepsy, CP, CVI, CAPD, Medically Fragile, G Tube (DS)
At what age did your disorder become a daily issue? *
2
Who were you before your illness became debilitating? *
A regular mom before they were sick/special needs
What would you do if you were not dealing with your invisible illness? *
I have absolutely no idea. Unfathomable.
What would you like people to know about your daily life? *
That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...
What would make living and moving in the world easier for you? *
If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")
Do you have any life hacks? *
Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.
What kind of support do you get from family or friends? *
This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.
Have you ever had someone not believe you have an invisible illness because of your appearance? *
Me less so because I'm very proud so I don't share much. My daughter, all the time.
Has this been a positive or negative experience? *
It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.
Would you care to relate the details of what happened when someone didn't believe you were disabled?
It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.
How has your invisible illness affected your relationships? *
Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.
Is there anything you are afraid to tell even the people closest to you? *
Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.
What is your best coping mechanism? *
My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.
What are you the most fearful of and hopeful for in the future? *
I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!
What is your favorite swear word?
Fuck or Douchebag
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.
So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.
What is the best purchase under $100 that helped your life
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