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P.E. Moskowitz's avatar

thank you so much for this. it's so rare to read writing that can hold two truths at once. <3

Rasbands's avatar

It's heartbreaking to me the way you keep deriding the part you wrote after you got covid. It's excellent writing. Sure, it's in a different style from the more philosophical, analytical first part, but it's urgent and direct in a way that really compliments the rest of the piece.

As a veteran of the Extremely Rare Disease support forums, I have to tell you they aren't really great places for anxious minds either. Right after diagnosis, I was talking to a friend who has both mental health issues as well as an extremely rare physical disease. While neither of our diseases are well-known enough to have attracted hypochondriacs seeking homes, she still warned me against "sticking around in online groups" and that they "can be helpful for a little... but take resources, vet them well, and leave" (or something to that effect).

I was honestly kind of shocked when she said that, because I hadn't really clocked the fact that no matter the ailment or problem, the people who stick around posting in these forums are the people who place the most importance on having the disease. Incidentally neither of our diseases in this case are curable, so it's not fully a matter of those who recover leaving. But the same effect as you describe, with algorithms amplifying the voices of the people in the worst crises and are the most disabled and therefore have the most time at home ruminating about their disease and posting about it. (I feel rude for saying that; there's nothing inherently wrong with posting a lot or having a higher degree of disability, or both, and like you I've benefited from the disability activist community, but there's a strange effect in forums of the people suffering the most driving the conversation with zero guardrails).

I think it's not just algorithmic. I remember when I first started using, idk, social media of not just strictly people I know (e.g. twitter, reddit) and I was shocked that it seemed that every single person in the world had terribly abusive parents. It took me a long time to realize that this is mostly simply a result of the fact that it's incredibly rude to respond to some vent post with "well actually my dad is pretty cool and I like him." I saw the same thing in the Rare Disease Forum; only the sickest people with the most surgeries would comment, and no one would jump in and announce that today all their [symptoms] were pretty good. I ultimately left the forum and hadn't checked it for a year... and it turns out I was actually misdiagnosed anyway. I have diagnosed anxiety, but my thought spirals latched onto other things than the forum I guess. I really could not say why.

For what it's worth, I agree with you about the libertarian internet being harmful. But I have no idea how to strike a balance between the kinds of secret venting that DOES need to take place, and not sucking in people to an endless... I am not as good as words as you are... sadness and fear whirlpool?

Wishing you the best!

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