fibromyalgic reporting in


Here I was yesterday, in my office, feeling cute, feeling my invisible pain acutely. I’m drafting this today, on my phone, on my commute back from physical therapy. Today, I have none of the feeling I did yesterday. Yesterday, I had none of the confidence to contribute to the hashtag #cuteanddisabled, which I saw on Twitter and badly wanted to be a part of. It was a moment of visibility for a community I identify with, but one that is frequently socially determined by visual assessment. According to the eyes of our dominant culture, I pass for able-bodied. I have the privilege of being normatively cute with presumably minimal effort. When pain shatters the illusion, normate society recoils, cute suddenly synonymous with espionage, the cover of a less-than-functional human stealth-walking among you like I belong.

No one has to tell me I don’t, I know by our emphasis on vision that I belong nowhere.

Let me deconstruct.

I’m wearing clothes chosen from my top five painless outfits for the winter season: a black button-down shirt that feels barely-there, slacks that feel like I’ve forgotten to wear pants, colorfully striped Happy Socks, brass geometric jewelry, a teal/pink/blue/purple retro plaid pocket square. The more pain I feel, the more I try to conquer it by channeling Audre Lorde in Zami and costuming to play different roles, all of which convey more toughness than I feel. I imagine I look cool. Casual. Ready to tackle my day. But if you could see what I do when I look at myself here. I see strain in the disconnect between mouth and eyes. In the contorted posture, an attempt to stretch leg and lumbar muscles wound too tight to permit movement. In the slouch, an attempt to relax a pelvis made useless from living, working, weather, commuting. The hand exercising a death-grip above a throbbing ankle, to quiet it and to stop itself from trembling.

Even with hashtags like these, I have been socialized by discourses around health and disability to believe that I can’t complain because I am not disabled enough. To complain about my condition is to belittle others worse off than me. I am supposed to be grateful, to take passing is a gift. And it’s true, I’m not ogled for my pain. As long as I can keep it from overtaking me. Which is not guaranteed.

I look at this photo and I see someone so braced for the next thing, the present was a glazed dystopia of resistive possibilities, long before it actually became one.

Suffering cannot be measured or compared. Invisible diseases, especially pain, can’t be visually accessed or confirmed. There’s no incontrovertible evidence of it. I’m always staging it, or not staging it, to be believed.

In the stream of #disabledandcute tweets, I’ve seen a couple that express the sentiments I’m trying to articulate : I have fibromyalgia, and that’s technically a disability, but I don’t think I should insert myself because I’ll distract from how bad everyone else has it. 

That’s my landscape, too. But what I’d like my horizon to look like, why I’m posting this image, what I’d rather this hashtag do, is not just reveal visual suffering but build equity across diagnoses, even in spite of the visual.

Leave a Reply