A Letter, for EDS Awareness Month

by Shaker aforalpha

[Content Note: Discussion of disablism and effects of disability.]

An open letter to the women who gave up their seats on the bus:

This is the thank you note I can never send for the gift you didn't even know you gave.

Yes, at the time I thanked you for the seat.

But see, because you stood up, I was able to work a full day. I was able to sit in a conference room. Give a presentation.

Because you stood, I didn't have to hold the grab bar. And when I arrived at class, I still had enough hand and wrist strength left to unzip my own coat.

Because you stood, I was able to run errands this evening. I was able to stop by the pharmacy, finally. Tonight I will take my anti-nausea meds for the first time in several days and I will sleep without a bucket beside my bed.

What you don't know is that I have a form of Ehlers Danlos Syndrome (EDS), a genetic condition impacting my connective tissue. Each type of EDS is different and two people with the same type can be impacted differently. Hell, the impact on the same person can fluctuate radically over a day, a week, a lifetime. And no one really knows why. EDS is considered a rare disease and as with many rare diseases, we don't have robust well-funded research, we have anecdotes and wishful thinking. (Who am I kidding? What medical research is adequately funded right now?)

In my case EDS means, among other things, that my joints are very loose. Many of my joints dislocate throughout the day with no encouragement on my part. A sudden movement on the bus might pull my shoulder out of place. Or it might cause me to roll an ankle. And faceplant. Onto a stranger's pecs. Hypothetically, of course. I definitely don't know anything about that…

My EDS also causes me to have blood pressure lows, with lightheadedness and fainting. Also, vomiting. This is exacerbated by standing. You saved us all a lot of time that morning.

As an EDS patient, I am also at risk for early onset osteoarthritis and have a higher likelihood of needing joint replacement. I've worked with occupational and physical therapists for years in order to make these crappy joints last as long as possible before I have to buy new crappy joints. Every time I don't need to stand on the bus it saves me that little bit of wear and tear. You wouldn't think it would matter, but I once spent an extremely tedious and painful occupational therapy session relearning how to press the buttons on the microwave. Everything matters.

Anyway, I share this, not to pass out metaphorical cookies, but to give context. And to express appreciation for something that should be commonplace, but isn't.

I know that you did not stand because I have EDS. You stood because I said I needed a seat and asked if anyone was willing to give up theirs. Some of you heard me and got up right away. Others among you stood when I repeated my request, emphasizing that I have a disability. Or when no one else got up. But all of you did something extremely valuable: all of you helped a stranger who needed it, even though that need was not immediately and visibly apparent to you.

And, yes, some of you stood reluctantly. But I'm not mad. The nature of invisible disability and many other kinds of needs is such that you may have required a seat too. I trust people to make good decisions for themselves, so I assume you stood because you could. But I also know that before my condition worsened, I sometimes stood for others when no one else would—even though that meant more pain later. (I had to. Because I understood. And because I could.)

I hope that standing didn't cause any of you pain or fatigue. I hope it didn't make your day measurably more difficult.

I hope that more people follow your lead—that they recognize that disability isn't always visible. That they believe those of us who live with invisible disability.

And that when you really need it, someone gives you a seat.

Sincerely,
aforalpha

May is EDS Awareness Month. Please visit the Ehlers-Danlos Society or the National Organization for Rare Disorders for more information, resources, and ways to get involved, if you are so inclined!