I was diagnosed this November with Ehlers Danlos syndrome, a genetic disease that affects the collagen in my body but feels as though everything from my bones to my muscles to my brain is turning to a mixture of acid and mush. It took seven years of trying to assert the existence of this pain only I could feel or see before receiving this diagnosis. At thirteen, I fell ill with stomach pain. The doctors, noting my weight loss, diagnosed an eating disorder. At fifteen, I broke out in rashes. My hair thinned. My legs quivered. My chest ached. The doctors, noting the quantity of different symptoms, determined stress and perhaps anxiety. I avoided the doctor for three years, retreating, traumatized by disbelief.
I used to believe that diagnosis could grant validity, that having a name could act as key to belief. In a medical system where disabled people’s assertions of pain are invalid, instead validated only through the certification of truth by outsiders, I believed diagnosis would grant me relief, if not from illness, then from the seven years of being told I did not know myself.
But the cycle of invalidation continues. I had not slept for two weeks. I was vomiting. My ears were ringing. My heart rate was climbing into the 180s while I tried to sleep; I told these things to a nurse one night on the phone somewhere in the fog of months post-diagnosis. She told me this was the nature of my condition and I had to better learn to live with and manage it; my degree of pain was not a matter of access to resources that could ease it, but, to her, a matter of my own failures, my own inability.
Before my doctor’s appointments, I sometimes play a game in my head. I imagine myself walking into the examination room and not smiling. Then I rewind and I walk into the examination room and smile. I walk into the examination room and do not cry. I walk in and cry. I walk into the examination room and do not speak. I walk in and speak. Loudly. Endlessly. Regardless of which role I play, I have determined that to avoid having my emotions categorized along with my pain into diagnosis, I must somehow balance myself on my already shaky, hyperextended legs, carefully at the center between extremes.
I am not new to this kind of arithmetic, the calculations made in my head of what will be seen as too few symptoms to schedule a doctor’s appointment, or too much within the limited view of health as single variable. When I was thirteen, I was institutionalized after a children’s hospital could not determine the cause of my weight loss. In the months preceding diagnosis, I was angry. I cried. I spoke. Loudly when I was taken away from my parents. I look at the records I was able to secure five years later, at the diagnosis of anxiety I was given for refusing to cooperate, for making poor eye contact, for appearing “guarded,” in the face of strip searches and supervision in the bathroom. My refusal to willingly hand over any part of myself was my self-preservation but, to doctors who could not see my humanity, it was disease.
The idea that things like a child’s grief after being ripped from her parents arms, a woman’s determination to be believed, and a sick person’s frustration and fear for their life are pathological, diagnosable, disease is ableism. It fills me with an anger I cannot and will not silence.
This kind of emotional pain cannot be circled like my hands or knees or back on any questionnaire. But this does not mean it is not also rooted deeply inside my body, inflamed and aching along with everything else.
Diagnosis can be relief when it gives a word, a name, and a community for a person’s experience, but it can be oppressive when it is used as a tool for dismissal of pain, of self-definition, and of life.
At this latest appointment, the doctor enters the room and tells me it’s nice to see me in person after getting to know me on paper before we met. I wonder, though, what might be different, if she got to know me through, and listened deeply to, my own writing of myself.