Sjögren's

I recently got diagnosed with sjogrens and its likely lupus as well. Im scared. I feel alone. I feel like im reassuring loved ones that im not dying more than ive reassured myself. I just barely started putting myself first, I came out to my parents and stopped trying to fit in where I didnt.. I was finally free from people trying to control me. And then I got sick. I had such a tiny window of freedom... I dont want to be sick forever. I really really dont want to be sick forever.

Idk what you're suppose to post on here I just feel really alone... my family means well but they keep telling me stuff like 'I'm praying for you', 'im telling u this diet will make u have so much less fatigue', 'are you sure your doctor knows what they're talking about?' and im like its not gonna go away, you can will it away all you want but you're not willing the sickness away. Thats gonna be there forever, you're willing me away. Its gotten to the point where i dont want to tell more people I care about that I have this because im afraid they won't understand, literally not one person has understood that im dead tired because im sick not, just 'not eating right' or 'so lucky to have time off whenever you want' or 'just needs to eat more' or whatever stupid other thing.

And this stupid brain fog i swear to god I have never felt more dumb in my life I feel like the shell of a person I cant think, I cant seem to explain to people that I literally can't think a coherent thought especially when im out.

I keep trying to spin it in a positive way even in therapy, but its making me dissociate and therefore making the brain fog so much worse, so even if its just in this online post that i dont even understand if its okay to say all this or not, im going to be as depressing as I feel.

I really really dont want to be sick forever... I had such a tiny window of freedom

-MJ

Oh... and this whole getting diagnosed with sjogrens right after coming out to my parents when I was raised under a very homophobic cult that literally had people crying in anguish when gay marriage became legal in the us and proclaiming we were all gonna be punished and assaulted in hell, feels like a very sick joke from the universe even if i know logically that sounds ridiculous

#Lupus  #sjogrens