NilaJones

One of the weird things about having a chronic illness is that people, even medical practitioners, can't really comprehend that chronic illnesses fluctuate in severity

Every time I get the tiniest bit better, every one of my five medical practitioners takes responsibility. And sometimes the improvement is from one of their treatments! But the others will certainly not listen to me if I say it's from somebody else's 😂

And my non-medical friends get super excited, as if this is the beginning of a permanent cure

Every time I get worse, my practitioners are visibly upset. Not just because they care about me (I appreciate that part!), but also because they thought their treatment was working

I don't know how my non-medical friends react, because usually I'm too sick to see them

*

This post is brought to you by somebody who was all praise god!!!11!! because I looked like I was doing better than the last time they saw me, several years ago

When I tried to explain that I had been better in the interim, and was now not doing so great by comparison, and was sad about it, their eyes went out of focus. I was not complying with the narrative

Apr 3 at 9:08pmWeb
Show threadYjeva 5d ago
@NilaJones
I get it. Most people only see me on my good days and have no idea how many bad ones I had in between or what I look like then.
Show threadJude🇵🇸5d ago
@NilaJones Frustrating. I used to work with Crohns patients. Even the ones responding well to treatment had a fluctuating journey. We used to explain it to them by drawing a wave pattern across a page, then drawing a horizontal line (= timeline) through the middle of the wave, so they could see dips above and below the line, representing the normal progression of the disease.
Show threadLemLems4d ago

@NilaJones

My working theory is that they don’t want the realities of chronic illness to be real - because that means that you can do everything “right” and still get bad and/or erratic outcomes. They find that notion scary and unpalatable so they choose to pretend it isn’t real.

The fact that that invalidates the reality of our lives is sadly less important than their discomfort.

Show threadCetraria4d ago

@NilaJones I had to have this conversation with a friend recently. I had a pretty severe setback in December, and he apparently thought that before the setback I was all better. Uh, nope, I'd just stopped talking about it for a few years because what is there really to say. Yup, still spending 20+ hours a day in bed, how about you?

He was really distraught when I told him this is a permanent condition and it's unlikely I'll ever go back to "normal".

Show threadNilaJones4d ago

@Cetraria

Yeah it's so different from the way that medical issues are portrayed on TV

And because of the weird segregation of disabled people in our culture, people don't have any experience other than TV, unless they or a family member or very close friend has a chronic illness

And maybe not even then, if their friend or family member gets tired of talking about it!

Show threadCetraria4d ago
@NilaJones As many people as I know with family members who have chronic conditions, yet still seem clueless of how it works... I think part of that is TV, and part of it is puritanical moralizing garbage. If you just did yoga or lifted heavy things and ate kale/only meat/whatever ridiculous thing, you'd be fine. (Dude, that's not how autoimmune disorders work. That's not how much of anything works.)
Show threadJustME4d ago
@NilaJones I abhor with the fire of a thousand suns the linear progress narrative
Show threadHugs4friends ♾🇺🇦 🇵🇸😷3d ago
@NilaJones I've noticed that many doctors don't much appreciate patients they can't make 'better' with treatments. They take it as a personal affront, and blame the patient.
And relatives don't know what to do with "well, actually, it's worse," when you try not to depress them.