[TW: this post discusses medical trauma]
There are a lot of forms I have to fill out about when I “became” disabled. These are government forms, and they relate specifically to when I officially became unable to produce “substantial gainful activity” and a lot of other very complicated things. I am so used to having to produce this number for bureaucracies and on forms and every time Medicare asks me something that I can spit it out (mostly) without thinking, unless I have aphasia in which case it takes me longer to come up with the words.
Aphasia me can’t come up with the words for the year, so I have to work around them. I was twenty. I was born in another year, so if we add those two numbers together, we get the year. It was autumn. I look at someone near me, eyebrows raised. This means I am asking you a question, but it’s not coming out right even in ASL. Please help me think of months that happen in autumn. Please help me do this basic arithmetic. I am asking with my eyes.
These are the times I feel more obviously disabled, when I can’t force myself to spit out the number by rote, unfeeling.
When the grief for I was going to hike the Appalachian Trail bubbles under the surface, even though I have worked so hard to find other meanings.
Recently a date asked me, “When did you become politically disabled?”
This is a good question. I like this question more than the seemingly endless stream of microaggressions people insist are “well-meaning.” What happened to you? and But you’re so young! These questions remind me of the forms, of the bureaucracy, of the plans I had for after I was twenty that got derailed by being “permanently and totally disabled” and an “adult disabled child” which is the language of the state that I periodically have to apply to myself if I want things like health care and money for food.
Even after I had forms that stated I was “permanently and totally disabled”, there were times when I would not have used that word. I edged around it. It seemed like an abyss that I could not crawl out of. I hoped that maybe if I did not use that word, there would be some dreadful mistake (or better yet, a cure) and then all of this would go away. This world of doctors and “normal” blood tests even though I felt like a ghost trapped between realms.
Somewhere, though, I stopped seeing myself as The Only Ghost. I stopped seeing being disabled as the worst thing ever. I stopped waiting to be able to find meaning in my life.
Don’t get me wrong. There is still an ongoing process of grief for the things I wanted to do but cannot. Sometimes because of institutional ableism, as per the social model of disability. Other times, though, because sitting upright to type at this laptop is harder now than it was when I was twenty. My hips hurt, my hand hurts, my brain fogs.
Fibromyalgia, I was told upon getting my first “physical” diagnosis, is not a degenerative condition. These days, it is the continued loss of things I have forged into my new identities that scare me.
Yet I am also more used to dealing with fear. Not because I’m particularly special or gifted, but because I have so much of it. Welcome to having an anxiety disorder and PTSD, and also laying awake thinking: What will happen if I lose my health care? What happens if this test comes back positive? What happens if it comes back negative, and we still have no real clue what is going on with my body?
I can’t pinpoint exactly when I became politically disabled. But it was much more recent.
It is October 2017. I am preparing for an appointment with a geneticist who specializes in Ehlers Danlos. Not the geneticist with the three year waiting list who hasn’t called me back yet, the other one who just started her own practice and so had openings sooner. By sooner I mean “in three months” but this is soon for someone who diagnoses Ehlers Danlos.
We are told that it is rare, or maybe rarely diagnosed. It is a connective tissue disorder, specifically related to one’s collagen. The “glue” that holds the body together is an off-label brand that is extra stretchy. You would think this would be nice, until you dislocate a shoulder putting a shirt on. At least my skin is extremely soft? Also, I have less skin involvement, so I have soft skin but my skin doesn’t rip as much as it could.
The forms have so many questions about my body. I am doing other forms, too, the ones the government makes me do to continue proving that I am not a malingerer or a benefits fraud or a scrounger. Some of these are the words used in the UK by their austerity government, but they mean the same thing. I am Internationally politically disabled.
I am afraid of this appointment. Not so much that I will find out that I have a rare degenerative genetic condition with no real treatment, because at this point any answers seem positive. I am afraid of being dismissed as…well, those things people say about disabled people. Faking it for attention. As if I wouldn’t rather be carving pumpkins or crunching autumn leaves or mulling apple cider with my October, rather than mulling all these multi-page questionaires about my health.
There are questions I don’t know the answer to. Most medical forms are so similar that I can answer them by rote, if I have words. What are your medications? How tall are you? Do you smoke? Do you drink? How much exercise do you get? I dislike electronic forms because of the information security angle, but I would like to simply beam these answers to all my doctors instead of answer so many repetitive questions.
The geneticist has these and additional questions. What was your birth weight and length? When did you first sit up? When did you first talk? Were their any complications during your birth?
I go digging through my older medical records for my birth certificate, and find a stack of notes from my birth and from my first pediatrician.
I find answers, but they are not all the kind you write on a doctor’s form.
I have so many more questions.
One of the diagnoses in my laundry list is Postural Orthostatic Tachycardia Syndrome (POTS), a form of Dysautonomia that basically means gravity is my enemy.
My autonomic (or automatic) nervous system doesn’t always sync well. Most people stand up, the gravity pulls their blood downwards, and then their veins constrict to help push their blood up to important places like their brains. For me, the signal to constrict the veins! doesn’t always go as planned. I end up with blood pooling in my extremities, and my heart beats faster (tachycardia) trying to get oxygen to my brain. It can lead to fainting, dizziness, and a laundry list of associated symptoms.
It hit me hard as an adult, right after I was recovering from bursitis in both hips. It took three years to get a diagnosis, because “dizziness” is one of those symptoms that is non-specific, can take over your entire life, and isn’t limited to just one medical specialty.
In my pediatrician’s notes, there were multiple visits from my mother because I was turning blue as an infant and struggle to breathe. She was concerned about Sudden Infant Death Syndrome (SIDS), but when I look at those notes now all I can think about is that I had undiagnosed POTS much longer than I thought.
That maybe I had a disability — or more likely, disabilities — for much longer than I had been aware of (politically or otherwise).
Revealed, too, in those notes are instances of my pediatrician dismissing my mother’s concerns. There’s a distinct attitude that I am obviously a healthy baby and she is just a new mother who is overly worried about her child’s welfare. Unspoken code word: hysterical.
Except my mother wasn’t just any new mother. She was not only a nurse, but she’d taught maternal health in literal disaster zones. That’s how she met my father. In the United Kingdom, one of her early nursing posts was working night shifts on a children’s oncology unit. (Incidentally, in a creepy old building while the Yorkshire Ripper was actively hunting.)
So I think my mom can both handle her fears and also knows a thing or two about infant healthcare. Yet surely she must just have been a “hysterical” new mother.
I think of the time I got allergy testing for mystery hives. It’s the first time I remember a doctor just dismissing my symptoms as anxiety. My mother muttered under her breath, because I had been playing at a neighbors next to a lawn sprayed with chemicals. Now I would say, it was probably Mast Cell Activation Syndrome.
The doctor did say I had a dust allergy, but it wouldn’t cause hives. Then he showed us a video about how I had to live in basically a cell-like room with no animals and no books and nothing that could collect dust. I left shaken and in tears.
I used to wonder at how my mother knew exactly what to do: she made me laugh, and we came up with some compromise of cleaning and less stuffed animals but keeping my books. I got to have a dog as a child, which was good because animals have definitely saved my life more than once.
Now I think: she knew what to do because she knew what it’s like to have a doctor dismiss you, to make you fear your own body, to make you think your anxiety is making you sick. That’s how she knew just what to say to make it better.
The disability community talks about medical trauma: the process of being traumatized by the providers who are supposed to “do no harm” and, ideally, help you get medical care.
When I read these yellowed notes from my pediatrician, I think of how deep that trauma goes. Not just in the gaslighting I have received about my own symptoms, but the gaslighting my mother received about my symptoms.
Is it a genetic condition? We have a knot of pain, certain members of my family and I. If you describe it, we all know what you’re talking about. My mother no longer has it, because she finally got diagnosed with Thoracic Outlet Syndrome and got treatment.
We had both stopped asking the doctor about it for so long, because getting a lecture on your posture and being told to do the same neck exercises that exacerbate your symptoms is an exercise in futility.
How many generations had this knot of pain? How many of us just lived with it?
The geneticist won’t say definitively that I have Ehlers Danlos Syndrome. There’s a certain amount of politics, because the diagnostic criteria were all changed recently. There are genetic tests for some of the subtypes, specific markers to see if your collagen is atypical.
Hypermobility is common and, I am informed, sometimes benign (see: a benefit if you’re a competitive gymnast and manage not to be so Hypermobile you injure yourself). Science hasn’t found a definitive genetic marker for what used to be known as Ehlers Danlos III, but is now a plethora of subtypes related to hypermobility.
There is concern in the politically disabled community that the diagnostic criteria were changed because too many people fit the criteria, and it was becoming hard to deny us care and treatment. It was becoming hard to label us malingerers or benefits frauds when we could answer that actually, we had a rare genetic disorder. It was starting to look like perhaps there was a crisis of undiagnosed people, whose concerns had been dismissed, who needed answers and treatment and things that cost money.
The geneticist and I waded into this political quagmire together, but she would not go all the way into the deep end with me. She would not go so far as to say I have Ehlers Danlos, because by the new scoring I don’t. (Although arguably, if one takes into account historic hypermobility as well as current hypermobility, then I do have at least a 5/9 on the Beighton scale. Not that I’m counting.)
But she did say I have some kind of connective tissue disorder, and that it’s probably genetic. Is it Ehlers Danlos? [Magic 8 ball says Ask again tomorrow, or maybe in another year or decade.]
For now, I have Connective Tissue Disorder, unspecified. Technically.
This is a photo of a photo. It is my great grandmother, in her early twenties, doing the splits. Reflected in the glass of the photo frame are my hands and my camera. This was an unintentional effect, I wasn’t trying to be artsy or get a lens flare. I just wanted to have this photograph, to document that Yes, my great grandmother was so Hypermobile she worked as a contortionist.
I’m so used to people doubting disabled peoples’ narratives about our own histories, about our own family histories, that I wanted to be able to carry proof on my phone.
Look. See. It’s not just me. There’s a line of us, stretching back at least a hundred years, looking for some kind of answers.
After my great-grandmother got married, she worked in a factory. She got terrible arthritis. Her knees swelled up, and she used her grandchildren as impromptu canes. My mother remembers the way her hands felt, gripping her shoulders for support.
She carried a hip flask full of alcohol to cope with the pain. Addiction? Yes. To cope with an undiagnosed genetic condition? Most likely.
Thinkpiece: was alcohol the opioid crisis of the early 20th century? What would happen if we just believed people and treated their disabilities?
My grandmother won’t go to doctors, mostly. She was also a nurse, during WW II and after. She saw the advent of antibiotics.
She doesn’t like going to doctors, I think, because she’s afraid they’ll adjust her medications. She doesn’t challenge them directly, ever. She just agrees with what they say. Then privately, if she disagrees with their medical advice, she is what doctors would call non-compliant.
I don’t blame her. I don’t know what scars she carries, hidden, from those decades of nursing. Of the time she nearly died from a brain bleed, and the doctor tried to tell her it was “just a migraine.” That I only knew my grandmother because she was a nurse who knew the doctor personally, and kept saying the words “thunderclap” and “worst pain of my life” until he did a lumbar puncture to humor her.
He only believed her because a test confirmed what she said.
Her stubbornness, her refusal to comply, submit, obey, shut up and go home and take two Tylenol and call back in the morning, is what kept her alive another thirty odd years.
Here’s a puzzle for you. It’s word problem, and it’s one of the more difficult word problems I’ve encountered.
I. If (some of) my family has a rare genetic condition that has been dismissed for decades
II. If being dismissed, gaslit, called hysterical, can cause medical trauma
III. If intergenerational trauma can be inherited, epigenetically or otherwise
What are the effects of multiple generations of medical trauma on my rare genetic condition?
I know, also, that it is a privilege to have these stories. There is a Carl Jung quote I’m too foggy to remember right now, about how we tell children fairy tales to tell them how to survive monsters. Something poetic like that.
As hard as it is to know about my family’s medical trauma escapades, it is one way of having disability community. To know that I’m not alone.
It would be so much harder to navigate if I were the only one. If I were adopted, say, and did not have this lineage of people who also didn’t have words to describe “you know, the knot of pain” and nod sagely in response and say, “Yeah, that hurts.”
I am the first in this line of ancestors to willingly call myself disabled. Not just for the forms one must fill out, but politically. To use the word with gusto, to reclaim it. To throw it in peoples’ faces when they say But you’re so young and What happened?
To stop letting them make me feel ashamed, like I should hide these parts of myself for other peoples’ comfort.
Yet we all have been non-compliant or stubborn or survivors in our own ways. It is the only way I exist. One must be stubborn to survive, even though certain people will cluck their tongues and label you a troublemaker and write non-compliant on your chart.
Sometimes, fighting is the only way to survive.
Sometimes, fighting is the only way to do more than survive.
I only have these other words, words like politically disabled, because random chance and the internet and a certain level of education and generations of stubborn people mean that I survived to be here in this moment.
To grow up after the Olmstead Act and at a time when the American Disabilities Act did not seem revolutionary. It seemed “the way things had always been,” until I learned the Capitol Crawl happened in my lifetime.
I am tired of contorting my hypermobile body into shapes that make an ableist society more comfortable. I am tired of being compliant with things I know in my bones, in my aching myofascial tissue, to be wrong.
I don’t have answers. It could be some connective tissue that is unspecified or not otherwise specified or not yet discovered. But it exists, not just for me or even my family. There are legions of us, out on the internet and in the world.
I, for one, refuse to be silenced.