A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.
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Be excellent to each other
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‘I’m sure you’ll get better soon!’
I won’t. In fact, it’s only going to get worse.
‘You don’t know that, though.’
Actually, I do. Please stop saying that, it makes me feel worse. In fact, how about we don’t talk about my health at all, please?
– Actual conversation I had recently, and I still feel guilty about it. I couldn’t take it anymore, though.
Sorry you have to deal with that, OP.
I feel that. I frequently get "I thought you were getting better." No, I felt better than normal the last time we spoke. Sometimes I feel worse than normal. Today is just normal, which means managing some pain. "Oh, I thought you said the treatment was helping." Yes, it is helping reduce the pain sometimes. "Is there another treatment you can try?" No, let's start over.
I'm reminded of a conversation I had with my late best friend. He was incorrigibly optimistic (though fortunately had the grace to not be like this when it came to my disability), and he was a great person to have on side because he was a sheer force of nature when it came to problem solving. Sometimes though, being good at solving stuff meant he wasn't great at being reassuring when what I needed from him was emotional support.
There was a big stressful event at one point, and it was stressing him out too, because it was very high stakes for me and he desperately wanted things to turn out well for me. He would often try to reassure me along the lines of "it's okay, we're going to get through this, the appeal will go fine".
It took me a while to understand why this disheartened me further, but eventually I realised that it was because it felt like we were implicitly saying my future was contingent on this big and scary appeal process, which made me feel even less like my life was in my own hands. I explained to him that if he was aiming to be reassuring, what I really needed from him was to let himself be vulnerable and scared with me, because we actually didn't know whether we'd be victorious against the shitty, bureaucratic system I was fighting; I needed him to be saying stuff like "regardless of what the outcome of this process is, we'll get through it".
It was an interesting realisation because it revealed how actually, his relentless optimism/problem solving was as much a coping strategy for himself as it was a way of supporting his friends. He felt overwhelmed when faced with a potentially unsolvable problem, but ofc, so did I (and if he wanted to reassure me, we needed to be on the same page in that respect).
This is only somewhat analogous to what you describe, but I think there's a similarity in how people aim to reassure because they feel uncomfortable with the truth of "this is bad and it's going to get worse and that's fundamentally a cosmically unjust situation". I think your actions were justified and reasonable, because you've already had to come to terms with the injustice of ill health, and it's not reasonable for you to have to do emotional labour on other people's behalf because they're fortunate enough to have not gained that understanding.
In the thing with my friend, I was able to explain what I needed from him in part because we were so close. However, refraining from talking about certain topics (such as health) is also a valid way of approaching this problem. If people want to be able to support you, ultimately, they need to meet you where you're at. If they can't do that, then fair enough, but they can at least stop making you feel worse.
Sympathy and solidarity, friend
You guys have friends and people asking about your well being?
I guess I’d rather have constant “feeling better?/are you ok?” Than constant “oh I heard about this on Facebook! You should try it even tho it’s obvious bullshit! And if you say no I’ll be offended, so make sure you phrase your reply with adequate appreciation for me sharing this gem of information with you!”
I wish I had something other than chronic daily headache with migraine as a “main” disability. Everyone thinks their dumb little regression to mean trick is a cure (for the two headaches a year they get), but like even if it did work sometimes, I’m not, for example, sitting with my hands in ice water all the fucking time, because that’s also painful..?
I’m glad nobody tries to troubleshoot my back pain or other medical issues.. they just get sad for me and ask if I’m ok when I wince or whatever. Like no, but I’ve been dealing with it for over half my life now, so just leave it, please?
I think it depends on the vibe, for me. I've experienced it before where the "feeling better?" questions are sort of like "the last time I asked you if you wanted to do xyz thing, you weren't able to because of your chronic illness/disability. Are you magically not disabled so that we can do the thing now?". That's a different kind of disheartening than the cure suggesters, but not better or worse, in my experience — just different.
It sucks when people who you thought were friends act like they're inconvenienced by your illness. And don't get me wrong, it definitely is an inconvenience if a friend is no longer able to hang out in the way you used to, but the primary "beneficiary" of this inconvenience is the one who is actually chronically unwell. I lost a couple friends when I became disabled, due to this. The people who are my friends have worked with me to find ways to adapt (such as running games night at my place when I can't travel), which makes things easier in that I feel like it's me + people I love vs. my illness. People who give the vibe of "ugh, you're still ill" makes it feels like it's them vs. (me + my illness).
I realise I haven't meaningfully engaged with much of what you have written in your comment, but that's largely because I don't have much to add — you capture the frustration very well and unfortunately I can relate too hard to the silly nonsense cure suggestions.
the last time I asked you if you wanted to do xyz thing, you weren't able to because of your chronic illness/disability. Are you magically not disabled so that we can do the thing now?
This is what people don’t seem to get. I feel more and more guilty with every conversation like this.
No, I don’t feel better, but I should, apparently. And that’s my fault somehow. I’m not making that up or unnecessarily putting things on myself – it’s hard to come to a different conclusion when people get progressively more disappointed the more they talk to you. When you feel like a medical depressant. I mean that literally.
Every time I’m asked this, I feel like I should feel better, and when i don’t, I’m letting them down by not being able to do the thing.
Eventually I just can’t take it anymore. I’m letting everyone down by not getting better, so not only do I feel awful physically, but also mentally because I’m disappointing everyone I know. And god forbid I meet new people who I have to explain this to again.
I don’t want to meet people anymore, because I have to go through the whole thing again, and re-explain how it’s not going to be fixed by a diet, and yes, I know all the cures and everything. It’s exhausting.
e: clarification
You capture the vibe extremely well — the way you've explained it here makes me realise that when people ask if I feel better (yet), it low-key feels quite victim-blamey? Not in their intention probably, but in how it feels to regularly receive those comments. It makes me feel broken on another level beyond the disability.
just get sad for me and ask if I’m ok when I wince or whatever. Like no, but I’ve been dealing with it for over half my life now, so just leave it, please?
I'm glad you politely say you're as good as can be and save the vitriol for online. Curse those people for asking after your condition to see whether they can help at all out of concern. What dicks.
This is never the first conversation. It’s not like we snap at someone the first time they show concern. This is usually the final straw after many conversations where it’s not just well-wishing, but constant ‘helpful’ suggestions, after it’s been explained that our condition is chronic and incurable, we’ve seen specialists and had all the tests, tried all the treatments, and are in the management stage – and most conversations have become ‘have you tried this oil/vitamin/yoghurt/diet? Someone on Facebook said it cured their mother’. It’s exhausting and honestly insulting, like we haven’t already tried literally everything out of desperation, and are just too ill-informed on our own illness to have thought of this one common thing that will fix us. Most of us know enough about our illness to qualify for a PhD in it.
After years of that, it becomes hard to stay polite. We mostly still do, but it’s not easy. Venting online with others who can understand helps.
That’s rude.
I’ve been dealing with some of these issues since my early teens (yay genetic lottery! I’m almost 40) and most of the people in my life are well aware of that. I had my first surgery for it when I was 17.
I know it comes from a good place, but that doesn’t make it any easier to deal with, when I’ve been dealing with it for years. Decades. And getting the same slap-dash advice for years. Decades. When those people know I have a team of specialists to manage it, and go through what most people consider somewhat horrific management treatments.