One issue with ableism is diminishing, increasing and comparing pain. People often talk about conditions they suffer and apologize for my "worse" issues. Or, diminish issues "it can't be that bad you're so energetic" avoid with me. Pain is pain and suffering just sucks full stop.
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I'd rather be well than be an "inspiration" any day.
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Agree except if I can inspire as educator, friend, helper - as service and empathy. My husband and my once partner in music crimes were wheelchair bound and got such bullshit for "being independent" or my friend "A girl with a guitar, and that voice, inspirational!" Judgement sux
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Oh, sure. But I don't want to inspire people just because I didn't off myself when I became chronically ill.
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I have so I must be uninspirational! I could have been covert but I wasn't build that way. Processor is externally installed. Replacing it is too dangerous now :)
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I do believe in terminally ill patients when they reach intolerable pain shoud absolutely have the legal right to choose asissted death. This isn't suicide to me, but I'm borrowing oncology and palliative care ideas with the opiate form of compassionate death.
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My mother-in-law in Holland had cancer of the jaw and chose to die by euthanasia. There was so much grace and kindness in it. My condition is neither fatal nor (usually) agonizing. Debilitating enough to counteract a huge amount of privilege re income, but not worse than death
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You are lucky to know how to acknowledge your life's fortunes as well as balance that with your life's pain. It's an extraordinary balance that I myself could surely benefit from advice and help myself in correcting. Any advice?
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Honestly, I spent a lot of years bewailing the tragedy that had befallen me. Beyond the natural grief and rage of the experience, I mean, because it's a real loss giving up who and what you were. It took time, therapy, three 12-Step programs and medication to get where I am.
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And where I am is still a hot mess often enough.
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Replying to @salliegoetsch
At that comment not sure whether to laugh or cry because I can't figure it out for my own being either you do seem to come across as stronger than I do at times it's been a struggle that very few adults aren't experiencing! All the love

Jan 24, 2021 · 10:12 PM UTC

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Replying to @mholzschlag
Oh, and I forgot to mention that in the early days, there was a mailing list for people with CFS/ME where people shared both tips and jokes. (What's the difference between God and a doctor? God doesn't think he's a doctor.)
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Hehe. I was first diagnosed in the 80s as CFS/ME and started a stupport group. Everyone but me and maybe one other of the patients there is now dead. All blood, brain and other real fucking bad illnesses. And now Covid and "Chronic Fatigue" are linked? This is the viral age IMO.
Replying to @mholzschlag
Oh, and...when I'm really sick, or having a meltdown, or having a migraine, I'm not usually on social. So most people see me on the better days. Don't be deceived. ;-)
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Me, I've learned never to make assumptions about others ways of being or desire for privacy. In fact, I do the opposite. I post when the awful happens as part of my desire to show others as if it's that bad I'm alone or in hospital or hospice. Everyone must decide their comfort.
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