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Candice Arseneau She/Her's avatar

I wish more people knew what it was like to live with a lifelong disability. I have EDS and the amount of ableism thrown my way for a genetic disorder that even when I do “everything right” in the eyes of society viewing me as just lazy the flair ups are uncontrollable and unimaginable pain! The lack of empathy in our society for people in pain is hard to fathom!

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River Selby (they/them)'s avatar

It's SO true. Even my close friends can't truly understand, and they don't really try. Why would they, when they have no idea of the experience? It's also difficult because sometimes I am okay, or pretending to be okay, because I have to, but when I am not okay and need space or help or care it can be difficult to manage other people's expectations. I know I'm perceived as "flaky" sometimes but really it's my disability. Big hugs your way, Candice.

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Candice Arseneau She/Her's avatar

I relate to this so much River!

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Raechel Anne Jolie's avatar

Just chiming in with tons of appreciation and solidarity. The pain by another name thing lands so so hard. I had stage 1 lipedema since puberty; I had no idea because in stage 1 it doesn't cause chronic pain (basically the main symptom was thick legs and occasional joint pain I blamed on other things). Anyway, fibroid surgery caused me to move into stage 2 (it really messed with my hormones, which is a big part of it), and suddenly I had debilitating pain all over my legs. After tons of googling I figured out it was probably lipedema and a doctor confirmed. I have spent the last year on Reddit and in scientific journals and spending so much money on herbs and tools to manage how unbearable it can be. And grief...just so much grief for what I can't do easily anymore. Though, again, my ability to do that stuff in the past was probably partly due to stuffing down/compartmentalizing. Anyway. Just witnessing you in this and here in the boat with you and so many others. <3

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River Selby (they/them)'s avatar

I relate to so much of this. Sometimes I wonder how far back my RA goes- like I remember in my late twenties experiencing what I now call flares, except doctor's just prescribed me SSRIs and that was that. No testing. Nothing. And the grief. Yes. I feel that often, and then also feel grateful I am no longer (at least not all the time) dissociating from my body like I had been for soooo long. <3 This is something I so rarely write about but of course, now that I have, I see that I am very much not alone. None of us are alone in this. <3

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Line Bech Nielsen's avatar

Thank you for sharing! I'm living in the dark depths of severe chronic illness. Being in 8-9/10 pain for every second of every day and night for years. I do find chronic pain to be such a special kind of hell. I would happily live through every round of sepsis, huge blood clot in the neck, dozens of surgeries, years of being fed solely through IV, looking at an expected life span of 40 if just this excruciating pain would stop. Losing our ability to be active in the ways we want and long for is so tough as well. So sending solidarity, love and gentle hugs xxxx

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River Selby (they/them)'s avatar

I have no words of comfort for you because, having been in intense and excruciating pain for extended periods, I know that words cannot comfort (and often come in the form of unhelpful advice). I wish it were different. Everything you've written here makes complete sense- an injury, a catastrophe, even death feel like relief when the other option is unrelenting pain, and I will not shy away from that. I see you. One thing that brings me comfort is the knowledge that everything changes- change is always guaranteed. But in the midst of my own extended pain this also brought me no comfort. Just here in solidarity and wishing you relief. I'm so sorry.

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Line Bech Nielsen's avatar

Dear River, thank you so much for your kind words and compassion. It means a lot <3 Thank you for seeing me and holding space. While it's been this severe/only deteriorated for eight years, I'm definitely holding on to hope of change. Love, warm thoughts and solidarity to you xxx

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River Selby (they/them)'s avatar

❤️❤️

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Jude Jones (they/them)'s avatar

Prednisone gives me the worst anxiety as well. I’m sorry you have had to take it and endure so much. Thank you for writing alongside the pain.

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Robin Taylor (he/him)'s avatar

Describing pain without using the word pain... I've done that. What a trip. And I've done the Prednisone course with no taper. Yikes. The things our bodies can endure is fascinating and terrifying.

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River Selby (they/them)'s avatar

Truly fascinating and terrifying. Can’t wait to taper off but also hoping things stay good when I do.

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Antonia Malchik's avatar

"Was I strong? Or was I just good at calling pain by another name?" Wheewwwww, River. That goes so many different directions, all of them hard. Well said.

People with chronic illness and/or disability are, I find, most acutely aware of the many different angles by which society tries to erase and oppress. Thank you for writing about it.

And congrats on the starred review! (Also, my agent is also with Aevitas, which doesn't mean anything but waving hi from across their office, I guess!)

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River Selby (they/them)'s avatar

Aw thank you Antonia!! We're "at the same agency!" Lol I always find that funny because I've never physically been there.

Thank you for your reflection. It's always so appreciated, because I know you get it. <3

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