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I’m not supposed to share this photo…

The Chronic Pain Experience is supposed to look a certain way. And this isn’t it.

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black and white photo of woman leaping on cracked asphalt

I’m not supposed to share this photo because I’m supposed to be limited.

I’m not supposed to share this photo because I look happy.

I’m not supposed to share this photo because my body looks strong.

I’m not supposed to share this photo because the Chronic Pain Experience is supposed to look a certain way and this isn’t it.

Because if my pain is chronic I should wear it like a name tag.

Because it’s supposed to be the most interesting thing about me.

I’m not supposed to share this photo because if I can move, it must not be that bad.

I’m not supposed to share this photo because if I were really in pain, I wouldn’t—couldn’t—jump like that.

Because it’s easier for you to think of me one way: curled up in a ball.

Because you might not believe me the next time I cancel when I can’t get out of bed.

Because you’ll raise your eyebrows and say, “Well, she certainly picks and chooses.”

Because it could mean you’ll become frustrated with me when one day I can’t walk as far as you want me to.

I’m not supposed to share this photo because I’m supposed to be productive on my “good days.” And as a culture we still haven’t figured out that play is productive.

I’m not supposed to share this photo because it’s evidence that I was stupid and “pushed myself.”

Because I’m not wearing ergonomic shoes and everyone knows arch support makes all the difference. 

I’m not supposed to share this photo because my doctor won’t believe my pain if she knows I dance.

Because she’ll say, “If you’re serious about getting better, you’ll stop dancing for good.”

Because my treatment relies on me fitting into a set of symptoms and there’s no room for deviation.

I’m not supposed to share this photo because chronic pain is a disability and disabled people “can’t jump.”

Because you can’t believe I’m better at some physical feats than other people who don’t have a disability.

I’m not supposed to share this photo because you’ll think, “How bad can it really be?”

Because you’ll think I deserve it if my whole body aches the next day.

Because I’ll only have myself to blame.

Because I was asking for it.

I’m not supposed to share this photo because you need to believe living with chronic pain is binary. That you either have it, or you don’t. And if you have it, it should show.

I’m not supposed to share this photo because it confuses you and, as a woman, I’ve been socialized to feel like the comfort of others is more important than my own.

I’m not supposed to share this photo unless I’m prepared to smile and say, “Thank you,” when you tell me I jump well for a disabled person.

I don’t want to share this photo because you’ll comment on my body. On how “good” I look. At how “healthy” I am.

And I’m tired of my body being the subject of our conversations.

I don’t want to share this photo because you’re obsessed with categorizing everything into The Before and The After–a perfect “wellness journey” timeline–but my experience refuses to be categorized. Refuses to move in a straight line.

I don’t want to share this photo because it’s from the past and you’ll DM me wanting to know if I can do that now.

And, if I can’t, you’ll think I miss those days. And I’ll have disappointed you.

And, if I can, you’ll want photographic evidence of that, too. 

I shouldn’t share this photo unless I’m prepared to lose the “disabled” label, which I never felt quite fit anyway (and saying so says nothing about those who do call themselves disabled and everything about toxic dichotomies).

I shouldn’t share this photo unless I’m prepared for my disability to be ranked.

I shouldn’t share it because others with chronic pain will be expected to move like me–which isn’t fair–and I’m somehow responsible for their lives.

I shouldn’t share it unless I’m ready to hear you tell me, At least you can: 
move,
use your legs,
get out of bed,
smile,
dance. 
And unless I’m prepared to deal with the shame I feel when you use others’ “worse” situations to try to make me feel better about my own. 

I don’t want to share this photo because I’m afraid others with chronic conditions will
judge me,
question me,
interrogate me,
distrust me,
disown me.

Because I’ll have to prove my worthiness for inclusion in conversations about disability rights.

Because I’ll wonder if others with chronic conditions will:
think I don’t have it bad enough,
measure my pain against their own,
accuse me of using my pain to seek attention,
accuse me of using my capability to seek attention. 

And then I’ll wonder if I’m just paranoid.

I’m only supposed to share this photo if I’m willing to hide my pain experience because you only get to “look good” if you’re willing to keep the “bad” to yourself. 

Or, if I’m willing to be the poster child for overcoming adversity.

If my story is triumphant: if I’m now 100% pain-free 100% of the time.

If it’s all in the past.

If I can inspire others.

If I’m ready to stop identifying with my chronic illness community.

I’m not supposed to share this photo because it’s a piece of collaborative art. And I’m one of the 50.2 million adults in the U.S. who live with chronic pain. And we’re not supposed to inspire art, unless that art’s about our pain.

Unless the whole point of the art is to evoke pity.

Or to applaud the brave victim.

Unless it’s about consciousness-raising.

Unless we consider it our activist project.

I’m not supposed to share this photo because people with pain aren’t supposed to feel joy.

I’m not supposed to tell you that today I don’t feel pain. That I’m still surprised by this feeling. That I wonder when it’ll come back. And then I tell myself to stop wondering. 


photo credit

Noelle Williams Photography

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I'm Michelle-Marie, your new call-it-like-I-see-it friend.

I'm a Certified Functional Nutrition Counselor, women's health advocate, and mom. After years of hacking my way through the chronic pain jungle, I was fed up with the deplorable state of women's healthcare. I founded We Get To Be Well to offer women a framework for lasting wellness.

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