Life With Chronic Illness

When it comes to health, "play no games."

It means 2 things:

Never tough it out, never wait to take meds or use heat packs or sit down, when your body says stop: fucking stop. Immediately

And always trust your gut when it coms to doctors. If you get ANY weird vibes, get a different. Fucking. Doctor. Dont give them the benefit of the doubt, don't try to convince them.

And like, I get it- she doesn’t like to see me struggling or in pain. But it hurts to have to tell her “no, this is just a good day” and see her face fall the next time I do use it.

A couple weeks ago after another comment, I told her that I was in a lot of pain and was actually struggling really hard to be there. I should’ve been using my cane, I told her, but I wasn’t, because I was tired of how people were treating me when I do.

I prefer being in unecessary pain to getting stared at. I prefer being in unecessary pain to getting dirty looks when I walk down the street. I prefer being in unecessary pain to the pitying comments people make or the pleas for me to just pray more. I prefer being in unecessary pain to feeling like a freak. I prefer being in unecessary pain to the awful anxiety I get from using my cane in public.

"I hope you can rest soon."

"I hope you have a good day soon."

"I hope the pain lowers soon."

Saying "i hope you get better soon!" Sounds like "i have never interacted with a disabled person, i have no idea what to say to in this situation so i will say the thing i think im supposed to say."

We are not going to get better in the way you assume.

my mind is used to the way that my days go, my routine and my treatments and therapies, those are all normal to me. taking 20 pills a day, getting needle stabs regularly, not being able to work a full time job, spending majority of my time and energy on my health, all that is adaptable and liveable to my brain.

but what i have not adapted to, has nothing to do with work, or treatments, its the stuff you don’t think about until it happens.

i have not adapted to missing human connection, i have not adapted to not going outdoors every day, and i have not adapted to going days or weeks without intellectual stimulation.

now obviously no two people are the same and there are exceptions to this. but generally speaking we are social, curious creatures who are meant to have connections with each other and with the earth.

There’s nothing that makes me feel more isolated than wanting to spend time with people and always either having to make a sacrifice at the expense of my health to be with people or having to say no because it will make things worse and losing the fickle connections I had made.