How They Treat You When You’re Ill
“I don’t think that I’m going to be hanging out today. I’m still dealing with a migraine and I can barely open my eyes. I’m sorry y’all. Please have fun and be safe :)”
I used voice-to-text to send the group chat a message as I lay under three heavy blankets, my head covered pillows and my eyes, fitted with two sleeping masks and a pair of sunglasses.
This was back in January and I was in the middle of a serious migraine flare. They always came out of nowhere and I never knew when they were coming. But I knew I couldn’t even deal with sunlight, let alone the lights of my apartment.
A few days prior, I had heartily agreed to hang out with a few friends and I was truly excited about it. I had no idea that a migraine would come that evening afterward. We had planned to get our nails done together and get brunch. It would have been a nice reprieve after the workweek.
They knew about my chronic migraines, they had plagued me for almost a year by then. Just about every person who had seen me regularly had some awareness about them. It wasn’t out of the ordinary to witness me suddenly covering my face and wincing, curling into myself in pain. By this point, I’d become associated with chronic pain.
They responded to my text, telling me that it was all okay and that they hoped I’d feel better. All felt well.
But it wasn’t.
Fast forward, six months later and we’re chatting and laughing and everyone is referencing different outings that they had had together. I felt confused as different inside jokes swarmed around me and suddenly the feeling of being left out settle in. I didn’t know about any of these group outings. I’d seen a few Instagram pictures every once in a while but from the conversation, this was a regular thing. A regular thing that hadn’t included me. I cracked a joke about not being invited to any of these plans being mentioned, a way to get past the discomfort.
That was when the truth came in.
“I mean, the last time we invited you out, you canceled on us. You were all like, “Oh I can’t come, my head hurts”.”
There it was. The teasing tone filled my ears and I felt my heart drop.
My chronic pain getting in the way of me joining an outing six months ago had completely discounted any future inclusion in plans and outings. Something that I had no control over and everyone knew I dealt with and how debilitating it was.
That particular migraine had lasted three weeks. I’d called out of work several times due to the light sensitivity and nausea that made it impossible to leave my bed.
But suddenly there was no longer a true interest in inviting me.
Did they decide to stop asking me because they thought I’d always say no?
How come I wasn’t even given the choice? Any grace or understanding.
I always found it funny (not really) how this narrative of understanding when people have to cancel plans due to lack of mental and/or social energy has been pervasive the past few years. Even neurotypical people were pushing for this understanding in many viral posts and tweets on various social media platforms. But this same grace couldn’t be extended to me by the same people who believed in it when it came to mental illness.
This isn’t to say that we shouldn’t be understanding when those of us who are mentally ill have to cancel plans of course. But this same energy isn’t kept by the same people when it comes to my disabilities.
I’ve witnessed the way my friends now treat me sometimes versus how they did before I became disabled. It’s hard not to when you’re essentially given no choice but to hold scrutiny for most interactions due to the amount of ableism you experience daily. People used to want to see me more often, talk to me. But if I talk about my disability, my symptoms, or have to cancel plans due to them. They get weird and distant and I’m stuck wondering if the distance would have come naturally or if they’re now uncomfortable with me being disabled. I get it, I’m not the same as I was in 2017 because that was the last time my body truly functioned the way that it used to.
Am I not as fun? Hanging out with me, especially when you’re a friend who’s inviting me out requires a lot of thought on your end. How can I hang out with you if everywhere you want to go isn’t accessible to me while I’m in my chair? I can’t do a lot of the physically taxing things I used to be able to like heading to concerts, parades, sporting events, etc. Maybe it’s just easier to exclude me than it is to extend a little extra energy to consider my accessibility.
I don’t want to leave this on a sad note because it would be disingenuous to not include the positive ways my friends have treated me since my chronic illness and disabilities came around. I have friends who make sure the places we go to are wheelchair accessible beforehand, made sure shops had transit wheelchairs before I got my manual chair, would happily push me around when my arms grew tired and I’d asked. Friends who fight against ableism so I don’t have to advocate on my behalf.
When I’m ill they reach out and offer to bring me things, send me care packages and buy me medicine.
My friends helped me get both of my wheelchairs because they knew how easier it would make things, improve my quality of life, and make me happy.
I don’t always have to deal with being treated weirdly by those around me regarding my disability. I’m thankful that I do have the ones that I do who love me and my disabled-ness and want to make sure I never feel less than or left out and that’s important when you’re effectively alone in isolation due to how inaccessible the world is to you.
Originally published at http://teespoonie.wordpress.com on August 16, 2020.
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