Autism, Mental Health, and Undiagnosed Chronic Pain

This is a blog post out of more to come on chronic pain and exploring what it means to be in chronic pain and learning how to be visibly seen as being in such pain.

Some of my friends and acquaintances know that in recent years, particularly the last year, I have been having chronic pain. It’s not as bad as some people’s. It doesn’t really get to the level of excruciating, but it is constant. It also likes to be super inconvenient when going down flights of steps.

So, I’ve done two things: bought a more supportive pair of still professional looking shoes, and bought a cane. Fortunately for the cane part, I have enough friends with chronic illness that I am getting tips on how to not damage everything worse (and the signs point to it being progressive, as the pain has increased over the last couple of years).

Image is a cane with an organic, almost paisley-like abstract design in reds, oranges, and pinks. It has a very dark brown wood handle.

So there’s the cane, pictured to the left of this sentence.

Now is where you’re probably asking, “are you seeing a doctor for this?” The answer is yes, I am. It is just taking forever. This is because multiple people, including myself, suspect I have a form of Ehlers-Danlos Syndrome (EDS). I would show you some more of the reasons why people think that, besides chronic pain, but images of my joints and skin doing weird things are probably not the most palatable.

And most of the EDS doctors are in Baltimore. I am in DC and don’t drive. This is going to mean hauling my autistic, disabled, in-pain self  to the Greenbelt Metro from a not-close Metro station in Virginia and then find transport from there (maybe take the shuttle to the Baltimore airport and then Baltimore public transit). Or use another option, like Amtrak (expensive, but 40 minutes to the Baltimore Penn Station) and Baltimore public transit. Or Megabus and then a form of Maryland public transit (about 3 hours, possibly also more expensive than I want). Note: I am fortunate enough to be able access care at all, even though the journey may be difficult.

EDS is a genetic connective tissue disorder with not enough specialists in it.  In addition to most of the specialists closest to me being in Baltimore, the referral process can take a long time. I have to see someone who will refer me to an EDS and genetics specialist before I can even get on a specialist’s waiting list.

Also, I thought I was just depressed and that was causing the pain for a couple of years. Also, I was for the most part depressed for several months straight recently, and put it off because I was dealing with my brain being a jerk. And I don’t have the best executive functioning, let alone in the middle of depressive episodes. Even now, I’m worried my pain won’t be taken seriously because I have generalized anxiety and a history of depressive episodes.

Another reason is perhaps something I feel the most weird about: internalized ableism. “I’m disabled. I’m a disability rights activist. I should not have internalized ableism,” is the thought process. In some ways, I was afraid of admitting I had chronic pain. I am still nervous, to be honest. I am also nervous about the possible implications of EDS. I know there will be a community of “zebras,” as people with EDS call themselves, and others with chronic pain, to support me (thank you, Literal Heart folks, you’re a really good source of support, for me and for everyone in the group). But it’s still hard.

The amount of time it is taking me to get a diagnosis of EDS points out a lot of problems in the health care system, particularly for people with other disabilities, including autism. Like me. That could be another whole post, but for now, maybe just know that according to this study, “premature mortality was markedly increased in ASD owing to a multitude of medical conditions.” Owing to a number of medical conditions, many of which were likely treatable. But many of us are low-income and struggle to access health care. Or we have communication barriers to expressing our needs and health issues (and often go unsupported in this area). Or we just have a high number of co-occurring conditions whose relation to autism  like EDS – don’t get studied.

And like I mentioned… I have generalized anxiety. I have a history of depressive episodes, which are known to cause some amount of physical discomfort and pain. Even when I was having physical symptoms in college that had me close to fainting and being out of it, and would later be diagnosed as a quite serious medication interaction – one of the assistants for student housing took me less seriously when I recited my psychiatric medications from memory. It was one of the only things I managed to do that night as I got progressively more out of it (in fact, I was so out of it that my friend who was with me was the one who noticed her taking me less seriously). The student housing assistant assumed that it was in my head. I have quite a many things going in my head. But this fogginess and incoherence was not the result of one of them.

This is going to be a quite annoying and long road to deal with – getting diagnosed. I find it striking that even after the end of getting a diagnosis, I will start getting care at 23 sooner than a lot of other people with EDS. The other part of the road, the reason for new shoes and a cane, will be continue to be physically painful to deal with. But I will have people to turn to for advice and a new community to join.


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