Art Helps

July 12, 2023 7:28 AM

My disability makes my body feel unpredictable A brief and impactful comic about living with a dynamic disability and chronic pain. A lot of disabled people live in the liminal space between health and disability, trying to navigate fluctuating abilities. Making peace with that is hard.
posted by Bottlecap (8 comments total)

Thank you for sharing this.
posted by Fizz at 7:34 AM on July 12, 2023

The line that got to me was, I'd scream at my body: "How dare you betray me! You're the one thing I trusted."

No, your fragile body is the one thing that must and will fail you. It's a fragile, walking sack of meat. But how very, very seductive is the temptation to ignore that, and forget that and shut that truth out of your consciousness. The one thing that you can rely on is that your body will fail and will get broken and will stop working and cannot be fixed.
posted by Jane the Brown at 8:09 AM on July 12, 2023 [4 favorites]

Omg I’m an immigrant with fibromyalgia (plus five other chronic illnesses), I relate to this comic so hard, thank you for sharing Bottlecap, and for your continued Disability Pride Month posts!
posted by ellieBOA at 10:45 AM on July 12, 2023 [2 favorites]

Thank you for sharing this. I also 'won' the weird unpredictable autoimmune disease lottery. The worst part is that I can go from strong and healthy, hiking up mountains without a care, feeling great, to housebound for days where even walking up a flight of stairs is a struggle. Its fun to explain to others.

I've spent a lot of time beating myself up for not being smart enough to figure out my triggers, or what I was doing 'wrong', be it my diet, exercise routine, sleep, whatever.

The big ah-ha moment was when my rheumatologist, objectively one of the best in the area, with decades of experience told me frankly that he had no idea what was going on. It scared me at first, because how was I going to figure this out if even that guy can't. And well, the answer to that is; exactly, I might not.

So I've come to the same conclusion as the author in the post, its just how it is, and that's okay. It's not giving up on trying to make things better, its just being realistic in the expectations.

I've started embracing the slow days, taking up bird watching, or just sitting in the garden. I've found a new joy in long baths with a good book, and just sitting and enjoying the wonder that's happening around me. This feels like a much healthier way to live.
posted by Pink Fuzzy Bunny at 10:47 AM on July 12, 2023 [9 favorites]

I really like the comic format for exploring nuanced and emotionally complex stories, like coming to grips with what might be considered an invisible disability
posted by SaharaRose at 11:14 AM on July 12, 2023 [3 favorites]

Thank you for introducing me to the term dynamic disability. I’ve used the phrase intermittent disability, but dynamic is more accurate and comprehensive. I appreciate the variety of posts; they’ve given me a lot to digest this month.
posted by lilac girl at 8:57 PM on July 12, 2023 [4 favorites]

Heart full, heart full, lilac girl 💜
posted by Bottlecap at 11:15 PM on July 12, 2023 [1 favorite]

My now-husband was trying to get me to stand where I could see a view despite my fear of heights. At a certain point, I refused to get any closer, and he went “You know you’re not gonna fall.” And then I realized that for him, an able-bodied person, the body is dependable, does as you ask, and is extremely unlikely to randomly give out on you. I cannot imagine the difference that makes in one’s thought processes around things like assessing risk.
posted by vim876 at 3:55 AM on July 13, 2023 [5 favorites]