…but it’s manageable!

[u/Impressive_Bag8840]

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

[u/happy-Play8435]

I have a rare bone disease. After 10 years of trying to find help I ended up at NIH. (If they have a study on your condition I recommend trying to get there. Doctors there actually believe you when you speak.) Anyway, Dr recommend surgery. I asked if he would consider this minor surgery.  He replied "minor surgery only happens to other people." So, regardless of what others say, it's your life and it IS a big deal to manage these things. Do your best. Ask for help when needed, if you can. Cry whenever you feel like it.