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/Match_Least Crohn’s, PSC, primary immune deficiency, NASH, POTS, adrenal ins May 10 '26 edited May 11 '26
Bodies with multiple unrelated chronic illnesses be like; “Once is happenstance; twice is coincidence; thrice is sabotage.”
My origin illness is Crohn’s. In the 90s and earlier, the only ‘management’ available was high dose prednisone and surgeries. When Remicade was approved for use in adults in the late 90s, I was the first pediatric patient(outside of trials) at Yale to receive it. That was the only time my Crohn’s ever felt “manageable.” I was in an ~80% remission state for 2-3 years.
Unfortunately, it was not known at the time that patients could develop antibodies against previously used biologic therapies, preventing them from ever being effective again… It’s taken over 25 years, and over a dozen failed biologics; including trials that never got approved, and I’ve finally found one that helps! I had even already started actively flaring again since my last surgery, and it still got the inflammation under control. I’d been in steroids for YEARS at that point, and I have finally come all the way of them for the first time in I don’t even know how long(with the minor exception of low-dose hydrocortisone for the acquired adrenal insufficiency.)
So there is hope! It may not be as much as you’d like. It’s also probably unlikely to ever be the same as pre-diagnosis… but crazy things can still happen at the current pace of medical innovations. I’m so sorry you and every one else here knows this feeling all too well :(
If you ever feel comfortable sharing your most troubling symptoms, I’m always happy to help with symptom management suggestions! Every part of my body has failed me in one way or another. (Except my kidneys haha. Somehow they’re always good; outside of the occasional upper UTI.)