the grief of losing who you used to be

yes you are allowed to be sad. you are so allowed. and the people who tell you to stay positive can... well. they mean well but sometimes you just need to be SAD and thats ok. I grieved my old self for a long time. Some days I still do. It's not a one and done thing — it comes in waves. The pill organizer, the heating pad, the canceled plans... I see you. I AM you some days. You dont have to be positive tonight. You just have to make it through tonight. And tomorrow you can try again.

Everything you wrote is valid. The grief of chronic illness is disenfranchised grief — it's not recognized by society the way other losses are, which makes it even harder because people expect you to "get over it" or "look on the bright side." You lost your career, your hobbies, your energy, your spontaneity, your independence, your identity. Those are REAL losses and they deserve to be mourned. I'm 4 years into my CFS diagnosis and I still have nights like this. They come less often but they still come. And when they do, I let them.

"my social life consists mostly of canceling plans" — that one hit different. because same. i have become the friend who cancels and i HATE it but i dont have a choice. the grief is real and its ongoing. its not like grief for a person where eventually you reach some kind of acceptance. because the loss keeps happening. every day there are new things you cant do or new plans you have to change and each one is its own little grief. you are allowed to feel this. all of it. tonight and whenever else it shows up.

I'm 58 with fibro and I still grieve sometimes. Not as often now but it still sneaks up on me. Usually when I see people my age doing active things — hiking, playing with grandkids, traveling — and I think "that was supposed to be me." What helped me was finding new things to be. I can't hike anymore but I took up watercolor painting. I can't travel easily but I became an excellent cook. I'm not who I planned to be but I'm still someone. That doesn't make tonight less painful though. So tonight, just feel it. We're here.

same.

I'm here as a caregiver dad and this thread is breaking my heart in the best way. My daughter is 19 with EDS and I see her going through exactly this grief. She was a dancer. She can't dance anymore. And I can't fix it. I'm learning from all of you what she needs from me — not fixing, not positivity, just... presence. Thank you for being so raw and honest.