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not a subpost, please don't take it personally 

I've gotten really sick of people wishing me a speedy recovery, essentially refusing to acknowledge chronic illness even exists. It's usually meant well, but actually hurtful. Imagine telling someone that lost a leg you hope it grows back soon.

not a subpost, please don't take it personally 

Reminds me of this quote about long covid: "[…] appear to be living with families and social networks who meet their plight with emaciated smiles and flittering eyes, betraying bewilderment at why they can’t simply move on with their lives (as though chronic illness were a self-destructive act of volition)."

re: not a subpost, please don't take it personally 

@meganeko oof yes, same thing when you're dealing with mental health...

not a subpost, please don't take it personally 

@meganeko @maddiefuzz i get that with narcolepsy too. It sucks.

Joke 

@meganeko lizard people dont get what you mean in this post, its the obvious thing to say!

not a subpost, please don't take it personally 

@meganeko :big_mood:

People/society doesn't understand, nor want to understand, chronic illness. The idea is you get sick but then get well. And you need to battle the illness so that if you're still sick, then they can say/think, well you're not trying. When people say "get well soon" I assume they aren't listening, and/ or that they don't really want to accept the reality of the illness. Both of which, as you say, is hurtful.

not a subpost, please don't take it personally 

@GwenfarsGarden thank you for saying this. Ive actually internalized this mindset you speak of a lot. That if im ill, well there has to be a way to get better, right? Or this pressure that i should be able to get better..
I have not even fully accepted my own chronic illness.

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@grace I got diagnosed with ME 9 years ago, and I still feel this sometimes. I think "maybe I need to try harder, maybe I need to push myself more". It's really hard to break out of the ableist mindset. The thing that's helped me has always been other chronically ill people to support/receive support from. The community makes such a difference.

not a subpost, please don't take it personally 

@GwenfarsGarden That makes so much sense honestly. Of course we find acceptance with the people who understand how it feels to live this way.
And, im glad in a sense im not the only one with the internalized bullshit to parse through. Im glad im not alone.

Thank you for sharing, so much.

not a subpost, please don't take it personally 

@GwenfarsGarden @meganeko Absolutely. I've explicitly asked certain people, including my mother-in-law, to stop saying things like that. With her, since it's got to be a long-term personal relationship, I explained, and she tries to understand.

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@GwenfarsGarden @meganeko (well, doesn't *have* to be, but Dragonlet is their only grandchild, and they haven't *quite* done anything sufficiently egregious to warrant loss of grandparenting privileges)

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@GwenfarsGarden @meganeko One thing I noticed, once I started telling people I suffer from chronic pain instead of chronic fatigue (and I do suffer form both), I get a lot less of both unhelpful advises and being weirded out.

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@JennyFluff @meganeko that's really interesting. #MECFS gives me chronic pain, so I might try that and see if I get a better response.

Unhelpful advice is a whole thing. Could people just NOT!

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@GwenfarsGarden @JennyFluff I think age also matters. One of my elderly relatives has Parkinson's. They know about chronic illness. They believe I'm very ill. They don't expect they will ever recover themselves. And yet they refuse to accept the fact I'm just as unlikely to ever recover.

Of course the rest of my (former) friends & family either suddenly "forgot" I exist or forced me to cut off contact because they kept gaslighting me.

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@GwenfarsGarden @JennyFluff IME this thread of what happens when you get long covid has been very accurate:

miaow.gay/@meganeko/1084939858

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@GwenfarsGarden @meganeko
Being chronically ill and always having struggled to properly explain it to folks who aren't, I've got to say: This one's an eye opener

not a subpost, please don't take it personally 

@GwenfarsGarden @meganeko I guess people feel really helpless. And also acknowledging that you may not have any control over it? That's scary.

not a subpost, please don't take it personally 

@draco @GwenfarsGarden You can't rationalise a way to be safe from something like ME/CFS or long covid. It can happen to anyone (vaccinated or not, "healthy" or not).

But no one wants to accept it could happen to them. And the only way to convince yourself it could never happen to you is to believe it's either not real or somehow the patient's own fault.

Related: miaow.gay/@meganeko/1085677631

parody of healthist rhetoric 

@meganeko "Have you tried yoga and veganism to grow your leg back?"

actual healthist rhetoric 

@ljwrites Wearing a mask to stop an airborne pathogenic virus? Nah. What you should do instead is eat healthily. Because that somehow magically protects you from viruses.

— The Dutch government (paraphrased, but yes, that's the actual messaging atm)

actual healthist rhetoric 

@meganeko that... that's... wow.

actual healthist rhetoric 

@meganeko @ljwrites holy fuck, i missed that one. ugh

actual healthist rhetoric, also sexphobic (+implied std) 

@meganeko @ljwrites omg what.
Big energy of "don't use condoms, just eat healthily and do yoga"

actual healthist rhetoric 

@meganeko @ljwrites also, do more yoga, and consume more broccoli smoothies

health 

@meganeko Oh wow, thanks for bringing this to my attention. I've already found some issues in the phrase "get well soon" but I only thought about the "soon" part.

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