When you’re disabled, people expect your story to follow a predictable trajectory: you experience a symptom (or a litany of symptoms), you see doctors and specialists, tests are run, and at some point, you receive a diagnosis. Though it might be an extremely long and murky obstacle course, it’s one that comes with a promise of answers. Yet for many of us, the reality is simply an endless stretch of uncertainty.
In August 1985, the Report of the Secretary’s Task Force on Black and Minority Health–more commonly known as the Heckler Report (named after its commissioner, Margaret Heckler, the then presiding Health and Human Services Secretary)–was published in the United States. For the first time, we had documentation on healthcare disparities experienced by people of color, particularly those affecting Black Americans, and the next year, our government formed an Office of Minority Health in an effort to address issues of health equity.
Systemic discrimination and oppression is not an easy thing to correct, however. Marginalized communities today continue to receive unequal medical access and treatment, and disability diagnoses are strongly skewed by various biases, including providers’ assumptions about gender and race.
In my case, I became disabled on my 21st birthday, as all of a sudden, my hands and then my arms began shaking uncontrollably and the movements grew more and more pronounced. Friends rushed me to the emergency room, where attendants immediately viewed my visit with suspicion. They drew my companions aside to loudly ask, “Just turned 21, huh? Is she an alcoholic?” and sent me home after several hours without running any tests. Since I hadn’t had much experience drinking, the official conclusion was that I was probably experiencing a severe allergic reaction to the beverage I’d ordered earlier that night.
The next day, I woke up and all seemed back to normal. By that afternoon, I was panicking and crying in the middle of the college cafeteria as the tremors began anew. The on-campus medical facility decided that it was best if I returned to the emergency room. This time, nurses and doctors were fascinated, calling colleagues over repeatedly to gawk at me with the refrain, “You have GOT to see this.”
This would be a pattern for the rest of my life: healthcare experts would be intrigued by my body, but not particularly inclined to offer concrete support nor operate with any sense of urgency or empathy.
I did at least get a neurologist referral from that second ER visit. At the time, my one month wait for the appointment was partially hopeful, as I kept having brief respites between episodes that would lull me into thinking the whole thing was over. But when hours-long tremors transformed into days-long spasms that also impacted my legs, I began focusing on the fact that I had a solid step towards understanding what was happening. It wasn’t yet time to break down with worry about the classes I was missing or my immigration status as a foreign student. Wait and see what the neurologist says first, I told myself firmly.
Over a decade later, I still go through ups and downs with accepting my lack of diagnosis. It is much easier to be at peace with having myoclonus (the term describing my involuntary jerking)–which is apparently quite rare in the movement disorder family, and not well understood–than it is to be fine with the absence of systemic and community support.
I have been able to identify triggers for my myoclonus and minimize occurrences, though sometimes I’m still out of commission for a day or more. I schedule things carefully in an attempt to build leeway for when my body invariably gets out of sync.
But when general practitioners ask me why I don’t see a neurologist on a regular basis, I don’t know how to encapsulate the toll of having to fight for care and testing only to ultimately end up being belittled and disbelieved when results are inconclusive. At best, I run into specialists who acknowledge my myoclonus with a jaunty, “It’s not that bad! And really, you probably don’t need to come back,” or a heavily emphasized, “Well, I believe you’re experiencing symptoms…” Sometimes medical professionals outright tell me I should be seeing a psychiatrist instead, disregarding that I’ve been to a number of psychiatrists who don’t believe that the problem is psychogenic. While I’m fortunate to have health insurance, I’m still bound by a finite amount of time, money, and energy.
Because I don’t have a definitive diagnosis to point to, people seem to view my disability as a kind of personal choice. Doctors frequently chide me with, “BE POSITIVE!” and my mother continually tells me to exercise more while ignoring that it would only exacerbate the myoclonus.
Friends will ask, “Whatever happened to that thing you had?” and react in total surprise when I reveal that it’s never gone away.
Every so often, I look online for forums or groups that might be helpful. Most seem to be very focused on getting a diagnosis and helping folks to become part of studies or raising money for additional specialists. I am more interested in the practical: what are the tips for dealing when you’re likely never to get a name for your disability and have a lot of internalized shame from years of people implying that it’s not real?
There are thousands of us who will spend a lifetime being disabled and undiagnosed. If you’re reading this, I want you to know that I see you, I believe you, and I want you to be part of disability justice conversations too.