Coping with a Chronic Illness Diagnosis

I’m 27 and after 10 years of cycling through specialists and all but begging doctors to take my symptoms seriously I just got diagnosed with AS this year on top of various mental health and other conditions…. It’s been really really hard, and I struggle with both pain management and feeling hopeless. I’m really lucky in that I have a therapist who isn’t ableist (I’ve heard some stories, some REALLY are), and we talk a lot about grieving the life I do not and am not going to have, so I can accept the one I do have. We also talk a lot about the balance of accepting that this illness is going to continue to get worse, but also, that my medical future is ultimately unknown. New treatments could come out, my symptoms/issues could change, or any number of other things. It’s something I still struggle with a lot, but allowing myself to truly grieve has been liberating. At different times I’ve been under so much pressure to meet ablebodied standards for school/work/career, to look on the bright side, to not “have a pity party” (ie be upset by my upsetting symptoms), and it left me in a really really dark emotional space that I’m still not out of. I’m still working at it. But allowing myself to actually feel the sadness and anger without guilt or shame has been at least feels like a step in the right direction.

Oh ok . I had to stop taking vitamins due to stomach issues.

It’s a struggle everyday but my faith keeps me going. Lots of depression lately but keep on going. We are here for each other.

Day to day. I try not to dwell too long on the future bc it is unknown. I allow myself to sit with the feelings I have but I try not allow them to consume me. Focusing on the present, the things that are here and now and the things I can do. Celebrating the small victories. Something I have also been trying on my worst days is finding one positive thing I have to be thankful for or happy about. Along with lots of comedy it is a natural pain reliever (reducer is a better word for it) anything that will release the feel good hormones for you.

I got diagnosed this year and I’m 23 Right now I’m on medication and I really don’t know what’s gonna happen when i get off it….this year has been one of the darkest days of my life and sometimes i feel hopeless about the future in terms of my health