My phone rang – someone was calling from a Washington D.C. number. I usually ignore unknown numbers, but something made me answer this time.
“Hi, this is *Frank, your Lyft driver. I see you have a chair, will it fit in the back of a regular-sized sedan?”
I’d forgotten I had my account on the accessibility setting. This must have been why the only available driver was over 15 minutes away – Lyft had to find someone who could transport a wheelchair.
“Oh, I’m so sorry, I forgot I had the accessibility setting on. I don’t have my chair with me.”
“Oh…ok. Well, I’m – I guess I’m about 10 minutes away. Bye.”
In my mind I began creating an awkward (or worse – judgmental) hypothetical conversation for when Frank arrived.
He seemed a little surprised when I got in the car without help, having kindly refused his offer to assist when he called upon arrival. After I closed the door, he held up my Lyft profile picture – the one included in this post – taking up his whole phone screen and said, “This is a nice picture.”
The actual conversation came later on – and while I appreciated that he asked the question outright: “What do you use the chair for?” I didn’t really have the energy to engage. But I did.
I was able to educate Frank about Ankylosing Spondylitis and the fact that not all wheelchair-users are completely chair-bound. And he was receptive. And it was not awkward for me. Rather, it was exhausting.
I would have preferred awkward.
Exhausting? Just to tell someone I’m sick? Why I use a wheelchair, and sometimes not? Indeed.
It’s more than simply stating, “I’m sick.” It’s giving a definition in tandem with the name of the disease, then explaining how it affects everyone differently, and then how it affects me personally.
And no, there’s no cure. Not even the marijuana you just suggested (for example).
Then there are more questions to answer. After that’s done, hardly ever do I hear an, “I’m so sorry, I hope you have good support.” Usually it’s me who ends the conversation, tired of answering questions, while continuing to dodge treatment and cure advice from the World’s Newest Expert on how I should be taking care of my body.
Compassion isn’t often the first response for many who have just heard about an invisible disease they are immediately skeptical about. People feel they have a right to know what’s wrong with me if I don’t look sick (even if I’m using a mobility aid) – and in their minds, I have an obligation to prove it.
Things like this didn’t happen before I got sick – the need to explain intimate details of my body’s functionality.
Now, with more visual evidence of my body’s brokenness (if not my chair, I use a cane & my wrist braces almost daily), I face more and more instances where the conversation can’t just be about the weather or why I’m in town, but about what’s “wrong” with my body and why I can’t fix it. Small talk has been replaced with face-to-face educational podcasts featuring me as both expert and host.
Sometimes I relish the opportunity. Other times I just want to pretend I’m actually an average, healthy person – and get a break from my medical chart. As much as I like raising awareness about living with a chronic disease, I would prefer to do it when I’m “on the clock” (on my terms); but when my body is the topic of conversation, it’s impossible to be “off the clock.”
I have made it my life’s goal to help make Ankylosing Spondylitis a household name. If I can help it, I don’t want people in the future to have to explain a relatively unknown (but not rare!!) condition to everyone they meet.
But sometimes, I wish I could just travel to the future where I just know everyone would know what Ankylosing Spondylitis is. Where they would immediately offer compassion and support for what I survive every day. Where I wouldn’t have to define and defend my diseased reality 24/7. Where I could just survive.
Where I could talk just about the weather.
Do you navigate life based overwhelmingly on your body’s functioning (or lack thereof), whether physically or socially? I’d love to hear about it. Share a story or picture in the comment section below.
*I have changed the name of the Lyft driver for confidentiality.