this post was submitted on 11 May 2025
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[–] FundMECFSResearch@lemmy.blahaj.zone 27 points 3 weeks ago (1 children)

this is exactly what talking to basically anyone about your struggles as a disabled person feels like;

“oh but havent you tried yoga” “I think I know some essential oils that could help you” “You need to workout more to make your body strong” (Me who has a mitochondrial/energy production disease 😭) “Trust me if you eat quinoa and supplements vitamins youll be back to health in no time”

Can’t people, just… offer sympathy. Why are they so entrenched with the idea they will know the magical solution to an illness 80 years of research hasn’t found a useful treatment or management strategy for yet. As if I hadn’t spent months in denial trying out bullshit treatments when I first became ill and lost much of my body’s functioning.

[–] boonhet@lemm.ee 2 points 3 weeks ago

ME/CFS must be hard to cope with. As a person without it, I also sometimes have pretty bad fatigue but it's mostly my lifestyle. Key difference is, if I get some exercise, I might be a bit tired at first but then I'll actually have MORE energy. This little trick is a life saver. I don't know how I'd survive if I couldn't do that.

You definitely have my sympathy and I hope they crack it soon.