Gas Lighting: Searching For Chronic Illness Diagnosis in American Healthcare System (Its' funnier than it sounds and just as frustrating)

“I put it down to herd animal weakness. I don’t want to show I could get picked off...I don’t want anyone to know..I’m here as the weakest gazelle going oh shit!” — Jen ToalDid I get lucky! I got to make a new friend. I hope you enjoy listening to Jen. She is an amazing poet and at the end of the interview you can hear two very powerful poems. She is hilarious and strong. She has been dealing with being sick and frail even though she has made massive changes (loosing 100lbs) and has just started in on her 40's. We talk about parenting with a chronic illness, the American healthcare system (buckle up its' about to get political), the importance of art when you can't get out of bed, and how important friendships are especially when you are dealing with chronic invisible illness. Ms. T's Answers {More Bad Ass Than Mr. T}Jen Toal Age 40ConditionsPTSD, Chronic Pain, Extensive nerve injury  nerve injuries in both arms, Not Quite Fibromyalgia (is that a thing?), planters fasciitis, Anxiety/Depression(...Hang on, maybe Ehlers-Danlos?? Amazing the things you can learn doing podcast interviews...) After watching Jen through the interview I was impressed at all of the crazy shapes she was making while stretching. She also has the swan deformity and so many other symptoms of the disorder I have.I can remember school officials started stepping in around middle school to try to help Mom and I address my symptoms. They couldn't find much obviously wrong with me, except for some scoliosis. In high school, I was given special locker accommodations each year to try to help reduce the load on my body and as an eighteen-year-old, our family doctor explained to me that I was experiencing the same daily pain as most eighty-year-olds. This was before the injuries of my twenties and thirties.I didn't get far working with that doc because growing up means losing access to health care in our country.  In my early twenties, I was working in tech support and saving for further college when all the nerves on both my arms were blown out by repetitive stress from typing. I spent the next several years in surgery and disabled. I got LOTS of doctor attention, but only on the subject of my work injuries. They were there to repair me from what they had done, not heal me overall.  The worst part of those years was being unable to draw.  In my thirties I found reasons to stop giving up on my life, most notably my husband, John, and our sweet child. John and I changed so many of our daily habits that together we lost three hundred pounds. https://www.facebook.com/shapeshifterconfessions/ Losing 45% of my pre pregnancy body weight has done amazing things for my health, but it's not the miracle cure it *looks* like from the outside. For one thing, jumping up out of my sick bed to chase my snuggly little kettle bell around gave me a wicked case of Plantar Fasciitis. It's a remarkably painful addition to my dappling of symptoms but was acceptable collateral damage to me. 1. Who were you before your illness became debilitating?A child.  2. Is there anything you would do if you were not sick? There are so many things. I would have so much more of a career. I would travel. I would go out in the evenings and be around people. I would make so much more art.  3. What should other people know about our daily life?That it's super easy for them to forget, but it's always there, reminding me. That it's exhausting to manage pain. 4. What would make living and moving in the world easier for you?Single Payer Healthcare and Universal Basic Income.  In my twenties I spent a lot of time with people who liked to play, "What if we won the lottery??" My answers always began with access to doctors and therapists. 5. Life hacks?Tennis balls are my latest favorite backpack staple. I sit and lean on them for point massage. They are especially magical for car trips, which have always been rugged for me.My backpack itself is my favorite tool, but like many medications that come with side effects, the magic bag does sometimes get ridiculously heavy. 6. Support from family or friends?I married really well. My husband is marvelously supportive and encouraging. My mother would help more if she were closer. Friend community cares from afar, but we are all spread so perilously thin...I saw this art show with a display that said, "We are living in an era that is testing the limits of everyone's compassion." I worry about all of us. Times are tough, and getting tougher, and I don't feel like my communities have the space to hold me up. Not because they don't care, but because they're fighting so hard to keep themselves going. 7. Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?Yes. All the time. It's horrible. I spend a bunch of time disappointing the humans around me because I look so healthy, especially after my weight loss, but I am still frustratingly limited. 8. How has this affected your relationships?It torpedoes them sometimes. On the other hand, it can allow for deep bonding when we understand each other. 9. What are you afraid to tell even the people closest to you?How bad the pain is. How pervasive it is. How scared I am of the future. 10. Does the fact that your disease is invisible change how healthcare professionals treat you?Yes. They often disbelieve me. I've been accused of being drug seeking. Which is pretty funny, given how much time John spends trying to convince me to take something. 11. Best coping mechanism?Diffuse awareness. Forgetting. Drawing. 12. Favorite swear word?John says if hell counts, it's hell. LolI have a hard time picking. Shit, fuuuuuuuuuuuuuck, godsdammit. 13. What are you the most fearful of and what are you the most hopeful for in the future?I'm terrified that I'll be unable to support my family in the ways they need me. I'm hopeful about the ways I have learned over the years that people make their livings with skills I totally retain access to, even as my spacesuit gets quietly wonkier...Cardboard Decades when i say ricky was my best friend, what i mean is he was my first consensual sexual partneri turned 5 while mom and i lived in his mother's househe was 6 i once pulled his little brother, fallen-comrade-style, across train tracks in the very nickwouldn't know for decades how scared i should've been they taught me prank calling and ladybug sailing how to be kind to the kind doberman and keep my dolls far away from the angry one ricky and i were softness and exploration in an already cruel and confusing world  i remember being 8 or so sun-drenched in the back of my grandmother's very nice cari wouldn’t know for decades about love languages but i knew in california i was given things, but few hugsand in texas, hugs, but few things i preferred hugs but it was well known that "daddy warbucks" and family had more money than made any senseand they didn't get as much time to be affectionateso it made sensethat they'd want me to have touchstones of affectionwhen i went back to my mother's wars how could they know? mom would send them letters, as she says, "full of things we never did. places we were never going to be." it wasn't just that we couldn't get above the poverty line i wouldn’t know for decades the term “human trafficking”  my poor mother. i also hadn't learned the different ways a car can sit that day i was walking homewith rickymom pulled overcountenance confusingtold me only i could get indrove awaybefore telling me we'd never go back i would never say goodbye i wouldn’t know for decadesthat the reason no one understands what i mean when i say we “moved a lot” when i was a kid is because i don't understand what i should be saying is we were homeless for more of my childhoodthan i had realized. only way to explain we have to move whenever someone gets mad or my doll protects me from the mean girli share a bed with  or we take my most evil stepdad backeleven times he's charmingand when he's around churches don't have to bring us things or the motels. national parks. so many places i stop calling where i sleep anything other than "the house"know if i learn the path from house to grocery, it’s probably time to go try out different versions of my name in different schools  sometimes compassion is a shovel to the gutoften my mother wakes up screaming i’ll never know how many trains she pulled us from the teeth of. only reluctantly came to see the damage of rootlessness on a childhood perpetual motion was our only way of survival.  i ran into ricky a couple years laterawkward amongst other kidseons away from the life we had shared i’ve been trying to shift my relationship with cardboarddismantling all my boxeslearning to build some belief i might just get to stay advice i am giving myselfupon meeting new soul mates stand solidly if you are ablehold your form fluid brace for beauty and the way it always knocks you over notice press of globeup through soles marvel at the moments experienceand universal shake hands trade knees compare the roads you have runthe trees you jumped out ofthe places your jeans have worn through skip right past groins and sexthis isn't that poem and connectioncan be betterfor being less obvious insteadpress your belly buttons togethera meeting of absences shared space to frame things frame thingsredo this if itfeels more truthful  consider the strengths of your matlet the space placed aroundyour best workhave its own things to say say thingsout loud experience is meant to be shared and no one needs your perspectivemore than a soul mate trade scars stories (tattoos totally count) tell each other tales of the ways the world hasn't endedeven if it left a mark breathe feel belly press bellylaugh you've been sucking down discordall day like too little sleeptoo much wirelessand a fundamental disconnectfrom how our species evolvedto thrive agree to thrive anyway slice out space for each otherin the places youforget to feel shame  allow yourselfand each otherforgiveness  for everything you’ve ever believed was wrong with you. there’s never been anything wrong with you.except not knowing there was nothing wrong with you. forgive yourself for lying to yourselfin order to stay small it’s okay to not be everything we are all of us everything togetherand we forget we don’t have to do it alone give up the notion you may somehow be on the same page you’ve only just collided from across the cosmos the particular constellation of harmonic convergences your empty spaces expressas you pass through each other are not the sameas being the same we are stronger for our differences befuddling though they be decide this is the gameand that you are always winning. because you are.  Don't Miss A Thing Sign up with your email address to receive news and updates. 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