I do not understand the world. I thought I would find an anchor in it somewhere after almost four decades in it. Even if everything is fleeting, there should still be mirrors—people, stories, something that shows me who I am. But the ones I was told about—parents, peers, passions—didn’t give me me. They gave me masks. Ideas for personas. Demands for performances. A wicked ability to accommodate, contort.

And then, I was diagnosed as too bendy. First, as on the Autism Spectrum. Then, with hypermobile Ehlers Danlos Syndrome. Some science surmises they’re related, that some people think EDS may be a cause of ASD. Fascinating. Finally, an explanation. Maybe a mirror? There are things in these acronyms that make deep sense of me to me. Could I put their acronyms after my name like PhD, MD, CEO? Megan Johnson, ASD, hEDS. ASD explains some of why none of the other mirrors worked. Girls with ASD respond to social situations the majority of the time by masking and reflecting; boy’s don’t. When I looked out at the world, I did what I saw. When I looked in at my passions, I saw error, nothing to offer the world to make up for my existence. So it was back to the masking (and the misery, but that, too, was masked: dark side down, as the world likes it). This is why girls are much older when we finally get diagnosed, often well beyond the age range where true supports are easily available, and often after three or four misdiagnoses. Still, I am relieved.

Research tells me this feeling is common. That a diagnosis, just naming a collection of symptoms, can bring hope. I’m not the only one. I’m not a monster. Maybe they can fix it.

Except: why should I want it fixed?

The community I am supposed to belong to now—the chronically ill, the disabled, the neurodiverse—says we do not need to be fixed. It is the world that needs to be fixed. It also says, we do not allow others to define us by the names of our ‘symptoms,’ a word that only bears meaning in an ableist world built by able bodies with able bodies in mind. That we should remain free of the shackles a diagnosis can put on us, and we should not let whatever differences our brains and bodies have define us.

But what if they do?

Ehlers Danlos Syndrome, actually a cluster of syndromes, is thought to be a heritable condition that affects, among other things, connective tissues. No wonder I have felt disconnected from people, peers, passions, my whole life. Being able to put both feet behind your head without feeling much of anything may be a neat party trick, but just because you can do something, doesn’t mean you should. EDS also causes fragile skin. Check. In all the ways. Maybe this is why I’ve wantednotwantedwanted to be disconnected from people, peers, and passions. This tug of war of ambivalence, it would take me thirty-five years to recognize, was one of the things darkening nearly every doorway of my life. I was always trapped in the wish to have made the other choice, gone the other way, than the one I did even after so much deliberation. EDS also has a truckload of “comorbidities,” one of which is ASD. Check.

But why?

It didn’t seem like many classically trained providers were all that interested in finding out. And, wanting to take the advice of what was ostensibly my new community, I didn’t want to over-identify with my diagnoses, especially since they are not ‘curable.’ But wasn’t it weird to anyone else that EDS and ASD often partnered up? Was it just an opposites-attract thing, with EDS bringing the bendy and ASD hogging the rigidity, at least in terms of thinking processes and interpretations of the meanings of words and schedule needs and resistance to change…or is that just me?

I did what any good citizen of the digital age who feels dismissed by traditional structures but also by spaces that are supposed to be alternatives and safe havens for us misfits: I took to social media with my research question. As someone who studied to be a librarian, I do not recommend this as a stand-alone strategy, which you can either hear as me saying you need to have a librarian help you do research as thus a conflict of interest or take as advice from someone with a detailed though by no means complete view of information in this day in age).

With the help of a friend who also struggled with mystery symptoms that Western medicine couldn’t easily pin down, I found this emerging theory: some EDS-knowledgeable providers are starting to wonder if maybe EDS causes, at least in part, neurodistinctions like ASD. Many of these practitioners posting IG reels explaining this theory are also neurospicy (the current “in” word for neurodiverse) which in my eyes, lends them credibility. They—we—know from the inside what connective tissue issues and having different brains are like. Lived experience and all that. Their theory has a few parts: 1) Neurodiversity is, in part, a difference in perception, which implies a difference in neurology. 2) Proprioception—how we know where our body is in space—is formed by the tension in our connective tissues, for everyone—neurospicy or not. 3) EDS messes with connective tissues, making ligaments lax, joints like JELL-O, blood vessels ‘baggy’ and ‘saggy,’ etc. 4) Therefore, our proprioception, indeed our whole neurology, might develop differently

I’m not sure what the clinicians or the researchers would say, but it hadn’t occurred to me before seeing these people, these peers, these passions, that this was my lived experience, too: my body and brain are not separate things that happen to each have separate issues that coincide in a way it often feels to me as a patient that mainstream medicine hasn’t bothered to try to truly explain. They developed together and they are a team. And that maybe, my body led the way in how my brain formed.

And that if I had a body without EDS, my brain might have developed differently.

And if I had a brain that developed differently—that is, ‘typically,’ so not differently?—I would be a different person.

Of course, I had spent the better part of the last forty years trying to be a different person every time I interacted with someone new. I became really good at it, but the thing is, it doesn’t work. Contorting and chameleoning into what you guess people want is not sustainable because everyone needs the love they receive to be for who they are. Otherwise, it doesn’t feel like love and everyone needs love like we need air.  So how do I escape the trap of performing for relationships, which has this dark side of spoiling love into reimbursement? Stop performing, of course.

Meaning be myself. Owning my diagnoses rather than trying to live beyond or above them. Megan Johnson, ASD, hEDS. What if that’s how I relax into this body and the brain it helped shape? What if that’s how I finally turn the dark side up so it can disappear not by being hidden but by finally seeing light? And so what if claiming my symptoms’ names is how I live free?

Megan Wildhood is a cyclist, saxophonist, gym enthusiast, cat lover and writer whose work has appeared in her poetry chapbook Long Division (Finishing Line Press, 2017), her full-length poetry collection Bowed As If Laden With Snow (Cornerstone Press, May 2023) as well as Mad in America, The Sun and elsewhere. You can learn more about her at meganwildhood.com.