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.
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11 thoughts on “What do you use your chair for? How a Lyft driver wore me out.”
I am so glad to find your blog! I was diagnosed about six months ago with AS. To read about what someone else is going through helps me feel less alone. Even my own friends look at me crazy sometimes because “I don’t look sick.” But yet, I can barely walk at times because my feet are in so much pain.
Hillary, I’m so glad you’ve found this blog too. I hope you’re able to come across other blogs and support groups as well…there can never be enough support for what we go through.
I’m a bit confused. I know you’ve been on the other side of health for a long time, but try to remember a time when you weren’t. And if you never were healthy, just know that people asking questions positively and politely IS how they show compassion. Offering advice on better health living is also how one who cares shows it.
If your car broke down in the middle of the interstate would you get mad and exhausted from people offering a free tow- or a ride to a safe place?
For the record- I have Brown-Sequard Syndrome. I can walk, but not really, look like a stroke victim, can feel, but can’t have severe muscle spasms and grand mals.
After my initial anger period, I had to accept and even learn to love when people ask about what’s wrong with me. I never find it exhausting or in appropriate. Why? Because for the love of everything sacred in this world, should something go wrong on that lyft ride, or at my favorite coffee shop, or the random gas station, should I fall and hurt my self at least the people around will know a little bit about be to tell the emt so they don’t have to guess what my issue is. It also makes them more comfortable, which makes me more comfortable.
Thanks for your comment. I’m so glad for you that you love when people ask you about yourself all the time. We all handle our diseases/conditions differently!
PS- comparing a car breaking down to AS (in my case) isn’t accurate, because cars don’t break down every time you get in one. I get asked invasive questions pretty much any time I get in a car.
Wow! We had some of the same discussions. Although I didn’t ask about the chair.
Indeed we did!
Charis, my husband has ankalosing spondylitis. (We’ve been married for 34 years.) Over time, I’ve been noticing more and more familiarity with the name of this disease, at least, if not with its mechanism. Keep up the good work!
Thank you for sharing this, Deb. Even in the short time since my diagnosis I have noticed more name recognition! It gives me hope.
I am at my stiffest when I’ve been sitting for a long time at work. When I have to get up and walk down the hall to get paper off the printer I often limp and walk unsteadily. I get the question “what’s wrong?” over and over. Seeing as I’m concentrating hard just to get the printer I’m often not very nice about these requests for information. I think I’ve glared at enough of my co-workers and muttered “I’m fine” that most of them finally remember not to ask anymore.
Thanks for sharing this, Anna. The constant reminder that your body is at the visual forefront of nearly every interaction has to be draining!