A lot of #EDS patients talk about developing high pain tolerance because of our frequent dislocations. I want to take a second to talk about the assumptions embedded in that phrase because it so often minimizes what were coping with. 1/8
I have severe allergies to most meds, I have no stable pain meds, I have bone pain from #MCAs, and I dislocate daily. I'm in a lot of pain all the time. And claiming I have "high tolerance" is a disservice to what I'm actually coping with. 2/8
I've learned not to cry, not to throw a fit, to keep working through the pain, because I've been told I need to my entire life. I grew up with Drs gaslighting my pain. I became a teen with doctors gaslighting my pain. I entered my 20s in the same way. 3/8
And I've learned that there is nothing left to do (no medical advice please I'm well read on this topic). But I haven't developed pain tolerance. It's not more tolerable. Dislocations are still painful. I just learned that crying got me nowhere. I learned to shut down. 4/8
When we say that our pain threshold increases, we are discrediting our experiences. My threshold changed because I went through physical trauma, and I learned that there is somehow always a worse pain to experience. But every experience is painful and exhausting and agonizing 5/8
I don't feel less pain. I just learned to stop talking about it. I learned that doctors will shrug whether you claim you're at a 6 or a 10. Theyll tell you your number is off. That saying "this is the worst pain I've ever felt" is equally as meaningless as quantification. 6/8
And I've learned that other people don't get it. I don't have a high pain threshold. I just learned that there is no other way to be. And I learned to compartmentalize and use unhealthy coping strategies in the face of something horrific. 7/8
I don't deal with pain any better than I did as a child. I just learned that it's this or death and I choose this. But that doesn't mean I'm somehow different. That my threshold is high. That I can cope better than the average person. Don't confuse survival with adaptation. 8/8

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More from @Nicole_Lee_Sch

11 Sep 20
Just a reminder for anyone teaching #DisabilityStudies, for some students your class is a lifeline. I was so excited for my first fully dedicated class in grad school. To explore my own disabled identity, hear disabled perspectives and talk about community building. 1/6
Instead I got a class where we read novels with poorly portrayed disabled characters written by able bodied people. We had theory debates where classmates discussed the degree to which social barriers lay the foundation for disability having never experienced them. 2/6
Since it was a grad level class, we were treated as equal participants. There were no guidelines about what we said. And while no one used ableist slurs or derogatory language, classmates often referenced ableism in underhanded ways. 3/6
Read 6 tweets
7 Sep 20
I met with a nutritionist last weekend who asked what I do. I told her I was finishing up my PhD and the response was "wow you're so driven to keep doing this despite being so sick." 1/
Nah. I'm not driven. I was raised in a lower middle class family. I started working at 16. I worked 60 hours a week some summers to save money for undergrad. It's not about mental fortitude, it's about survival. 2/
Without a job I can't afford medical care. Some specialists in #EhlersDanlosSyndrome don't even take insurance. So if I end up on SSDI I will lose even more quality of life. I will lose the few moments of stable health I get. 3/
Read 7 tweets
21 Aug 20
Just a reminder when you talk about "coping" strategies for the pandemic, self reflect a little on the classism and ableism in your recommendations. Spend time outside? I'm allergic to that. Cook something nice? My food list is 5 foods. Have a drink? I can't 1/
A friend contacted me upset that her unis chats about coping all counted on 1. Having money to buy Netflix or puzzles or fun materials for hobbies and 2. Being able to work out, go outside, be active, enjoy the "simple things" 2/
We both have #MCAS. Neither of us can go outside, we're allergic to the sun, we're allergic to most foods, definitely to alcohol, and we both have chronic pain and fainting symptoms. We don't take things for granted, because we're trying to survive. 3/
Read 7 tweets
6 Aug 20
TW: suicidal ideations, medical abuse Five years ago I was healing at home post-op after brain surgery. My surgery was a success but the whole process was miserable. My surgery was postponed the morning I got there. I was so thirsty waiting for hours with no fluids. 1/22
A nurse came by and took my temp and a half hour later I was told my surgery was being put off because I had a fever. I ask them to retake it, temp is fine. The nurse switched two of the numbers on the paperwork. So I wait even longer because they had called off the surgery. 2/22
I woke up after a successful decompression and fusion for an Arnold Chiari Malformation and cervical kyphosis that used my own bones for the bone graft. I thought I was dying. I could barely talk I was in so much pain. 3/22
Read 23 tweets
4 Jul 20
It's disability pride month so here's a list of some of the ableist practices I hear in the academy all the time/have dealt with:
My grad school wouldn't postpone my enrollment for a year even though I was having brain surgery. So I enrolled in my PhD program 6 mo after (1/14)
My family moved me to school knowing I was still ridiculously sick and not fully independent after a decompression and a fusion. When I got there I had no stipend and no access to Grounds bc the uni forgot I was coming. (2/14)
I wrote the only guide to accessible teaching and pedagogy available to TAs at my uni. It was supposed to empower TAs to guarantee ADA accommodations. In it I explicitly stated it's a legal obligation to provide these (3/14)
Read 15 tweets

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