• corsicanguppy
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    3 days ago

    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.

    • LillyPip
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      23 hours ago

      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.

    • SolarMonkey@slrpnk.net
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      2 days ago

      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.