1:52am June 5, 2014

“I read that when you live with a chronic illness, you experience grief and even loss.
And that is the fucking truth.
You grieve for what your body can no longer do or feel, or was never capable of doing or feeling.
You experience loss in that it feels like someone you love has died, but it’s you. You are not truly alive anymore.”

—

Wow. No. I’m alive. It’s everyone else who tries to tell me my life is over. I’ve been fighting like hell to prove I’m alive, and then I run into this?! I understand grieving, but there’s grieving what you’ve lost, and there’s acting like you’re dead when you’re not. I’ve been close enough to real death to know that you don’t want to say things like that in case they come true for real. Because really not being alive anymore? The real thing? It’s permanent, and it’s completely, completely different from just feeling really awful because you’re sick all the time. Trust me, you’re alive, no matter what it feels like. And I’ve been living with chronic illness my whole life, thought I’d die up until a few months ago something changed, and seriously I was never “not truly alive anymore” no matter how bad it got. And I worry about people saying stuff like this when I’ve had to fight for my right to even be alive because doctors already believed I was half dead already, and people go around saying they’re half dead already as if it has no effect on how we’re treated by the medical profession or otherwise. I mean yes, I understand this is someone’s feelings, but sometimes when you express your feelings, people listen, and people apply it to other people’s lives, and people die as a result, so it’s not just self-expression after all.