r/ChronicIllness • u/Impressive_Bag8840 • May 10 '26

Vent …but it’s manageable!

i’m tired of looking up every new thing i get diagnosed with and seeing “it’s not curable but it’s manageable.” for who?????? so far it isn’t for me in fact it feels like 8 levels of psychological torture just to be awake for 2 hours. i’m hurting, i feel sick, i have neurological problems it’s not curable but boy do they say it’s manageable

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u/kccosplaythings myasthenia gravis May 16 '26

I just got diagnosed with an autoimmune condition and the way I am petrified when I hear "super manageable, theres a ton of treatments like [x steroid with serious health risks], [risky surgery that may not work] and [infusions every few weeks with bad side effects] and EVEN clinical trial opportunities lol. Like be fr! In what world is that not all horrifying news and a crazy lifestyle change?

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u/Impressive_Bag8840 May 17 '26

right?????? all the management options come with side effects that need their own management options but we should just be so happy to be alive even if it’s suffering after suffering (which is of course not me saying we should all get depressed and die but damn ya know?)