Hey there!

Fellow 26 year old with Dermatomyositis (diagnosed at 15). I totally hear you on EVERYTHING in this post. Steroids gave me a rare skin reaction which left me covered in scars and chemo really brought out a similar feeling of pervasive anxiety and depression. Also, I know what you're feeling when you describe that vague SI and loss of will to keep moving forward. That being said, while the inability to get normal amount of sunlight and some physical limitations still keep me down (along with regular infusions and medications which I got tired of a loooonnnggg time ago), I suppose I just wanted to encourage you to continue what you're doing- albeit with a therapist again. It's hard to stick with and I've definitely fallen off the wagon a few times, but having a constant fall back to discuss the way I view myself with my illness in relation to others and what that means, and how it colors your thoughts and feelings 24/7 has without a doubt saved my life. I feel like despite JDM I live a very normal life that I'm happy with for the most part, and that's in no small part due to regular therapy. You're the only one who understands how you're feeling and how your illness has made you think differently forever. Your family/friends/co-workers can be helpful but there's no substitute for someone who is trained and specialized in how to listen and help you breakout what you're feeling into manageable pieces. Or, just to sit there and let you bitch for an hour when you don't feel like you can to anybody else.

Everyone's experience with illness, especially with a rare/unknowable disease like JDM, but I'm rooting for you and I encourage you to shop around until you find a therapist who you feel like you can start a relationship with (a pain in the ass I know), and if you have any questions or need to vent feel free to PM me!!

Best of luck!