May is EDS (Ehler-Danlos Syndrome) Awareness Month. You know, EDS, the thing I have where my joints just…go in all different directions. May is EDS Awareness Month and I….feel rather ambivalent about it.
That isn’t to say that I think it’s a bad thing. Quite the contrary. I am all for raising awareness about my brittle joints and the disease group that encompasses it. I’m just not sure what it’s achieving. Let me explain.
I am barely a year into my official diagnosis, so I am still navigating how to best care for my body at this point. My ambivalence could have everything to do with the fact that I don’t know what advocacy work is being done on behalf of folks with EDS. It’s entirely possible that’s the reason for my disconnection.
But and also, and I think this is a bigger part of it, there’s not much to *do* with EDS. As in, there’s no cure. There’s no way to ‘fix’ the lack of collagen in my body, at least at our current stage of medical innovation. There’s nothing really to do about the fact that my body has poor autonomic nervous system regulation. There’s nothing to do about the fact that I probably have POTS and MCAS.1 Example: when I went to my rheumatologist last month, she walked into the room and the first words out of her mouth were, “Did you just get your eyes dilated? Or are they always like that?” Nope, I did not get my eyes dilated (my Dad’s my eye doctor, and he’s in Western Mass, and I’m not due for an exam until November), and yup, my eyes are just like that. My pupils just dilate in darkened rooms, which is probably why I’m so light sensitive and get frequent migraines. It’s also why when I do get my eyes examined, I don’t need to be dilated. Again: there’s nothing to do here. This is just how my body functions. No doctor is going to be able to reverse my poor nervous system regulation.2
EDS is a really broad disease group, and it almost always shows up differently in people. Heck, the most identifiable symptom, joint dislocations, I don’t have. Trying to advocate for a single ‘cure’ is by definition going to leave out a lot of people who are legitimately suffering. Collagen is in so many different places in the body, that I’m not sure there’s one medical intervention that could cover them all. Most of what can be ‘done’ to make my life easier involves adapting my own daily routines. And while yes, it would be lovely to have a community support that, it’s kind of hard to make a compelling sales pitch to that end.
The type of EDS I have, Hypermobile EDS (or HEDS), is the only kind of EDS3 that does not have a clear genetic component. In fact, it’s a diagnosis by elimination. If there was nothing else on my genetic testing (which there wasn’t) then I was officially diagnosed with HEDS.4 All of the medical advice I have received since then has been about maintenance of my joints. Go to Physical Therapy. Don’t stretch to the full end range of motion. Go do weight training. Certainly not as sexy as Relay for Life.
It was a relief to get a diagnosis. It was a relief to hear that my doctors believed me. It is a relief to be taken seriously by medical professionals about the level of discomfort I feel on a daily basis. Yet, unlike a cure for cancer, I’m going to be working to preserve my mobility for the rest of my life. This is not a one and done deal. Outside of folks who I know have EDS, I do not see EDS Awareness Month mentioned on any of my social media or news platforms. So, ultimately, awareness is being raised among the people who already know about it.
I also still struggle with the word disability. Not because I am ashamed, but because it feels like I’m not disabled enough to merit the term. Sure, I’m actively in pain every day, but I’m still fairly mobile and live the life I want to. That thought in and of itself is betraying my own internal biases, conditioned by society, that disabled folks can’t live full lives with their conditions.
I know people who have much more severe physical limitations than I do, and it personally feels like I’m taking something away from them by waving my own flag. This is born out of a scarcity mindset that I’m aware of and still working on, but it still feels weird. Still feels weird to demand accommodations at work. Still feels weird to assert I’m disabled when I can regularly go for 3 mile walks every day. Still feels weird when I know it could be so much worse.
I’ve been thinking about this a lot lately because I started reading Disability Visibility, a collection of essays edited by Alice Wong.5 (And you were thinking there wouldn’t be a book connection here.) My instinct when I don’t know something is to go and learn more about it, which invariably involves books. This isn’t EDS specific, but it is about bringing awareness to different disabilities, and to the people who live with them. Representation is important, after all.
Ultimately, maybe my form of ‘celebrating’ EDS Awareness Month is advocating for myself and educating myself on what other disabled people live through. Maybe that is enough. Maybe I’ll feel differently come next May. I don’t know. Right now, I’m taking myself to Pilates for strength training, wearing my new fancy compression socks to improve my circulation, and getting new sneakers to properly support my ankles.
Maybe it’s just me, though. May is also Mental Health Awareness Month, and I feel just as ambivalent about that, too. Though the Virgo in me really likes that my two major diseases groups are combined to the same month. I should get a merit badge for this. Folks with EDS are known as Zebras, because common medical wisdom says, “When you hear hoof beats, think horse not zebra,” and welp, sometimes it is indeed the zebra. Sometimes it is the rare medical disease, and not the common one.
Happy EDS Awareness Month and Mental Health Awareness Month. May your joints be limber and your brains happy.
Postural orthostatic tachycardia syndrome and Mast Cell Activation Syndrome, two very frequent comorbidities of EDS that I have above 70% of the symptoms of.
Looks like we’re doing excessive italics this newsletter. I regret nothing.
There are 13 overall, mind.
I had one mutation, on the COL3A1 gene which causes the Vascular Type of EDS, but it is so rare that effectively, no one knows what it does. Per the NIH library, there are only four other documented cases. So doctors don’t think that it means anything, but they can’t be sure. Still want a t-shirt that says ‘Special Little Mutant.’
Alice Wong also just edited and released a new collection called Disability Intimacy, which I have and will also read. At some point. Don’t look at my TBR.