Welcome to Gaia! :: View User's Journal | Gaia Journals

In retrospect it's really obvious that I've been sick most of my life, but up until recently I just dealt with it without questioning too much. I've always felt like I struggled more than many of the people around me but I chalked it up to depression. Mental illness causes physical symptoms and since every test came back normal and my doctors didn't push to find the cause, I just assumed there wasn't one to be found and that I was a hypochondriac. Plus I'd already learned to not trust myself at that point, so it was just another way that I felt there was something wrong with me that I needed to hide.

I don't have a 100% sure diagnosis yet but the more research I do, the more certain I am. I've waited the 6 weeks my doctor recommended and we are going to do a diagnostic surgery. It's pretty minor and non-invasive. My biggest realistic fear is getting an infection. My biggest irrational fear is that there is a lobster living in my abdomen, squished between my organs and when the doctors take a closer look she snaps at them and cuts a major artery and I bleed out on the operating table and the doctor has to explain to my family why I died and it will forever be a medical mystery and I don't want to be remembered as lobster girl.

Anyway,
it's nice to feel like a normal person. Just knowing that there's a reason for how I've felt is comforting. Of course a diagnosis will help with finding treatments but ... if the surgery doesn't help with my symptoms I'm not super hopeful I will ever feel better. It's massively under-researched, poorly understood by most doctors, and insurance tends to not cover the best treatments because it's not "medically necessary" even though it is? It just is? Research shows that a slightly different version of the surgery is more effective and leaves less scar tissue, but insurance doesn't like that one for some reason. Doctors are misinformed but seeing a specialist is super expensive and not widely available and I don't want to go to New York or wherever just to see someone who knows what they're doing.
Healthcare in the U.S. is super dumb. guh!
Sorry for complaining, it's just that I've been manipulated and lied to by all of society in so many ways and now that I've realized it I'm a lil bitter.

I have one "inspirational" quote displayed in my apartment. It's the only one that has really clicked with me. It helps me to let go of the guilt I feel for being mentally ill and not able-bodied. (I'm not sure if it's accurate to call myself disabled? Does chronic pain/illness = disabled? I don't know yet)

Here it is:

~ Going at the pace of my nervous system is an act of healing and kindness to myself and for others ~


So take care of yourself as best you can. And don't feel guilty if you can't do what others can. Keep pursuing a diagnosis if you think you need one, even if you're doubting yourself the entire time. Trust your doctors but trust yourself more. If you can't afford to see doctors, google like crazy if it doesn't make you paranoid. Just don't give up on finding an answer to your question.
It's taken 14 years for me to get diagnosed and I was on the verge of giving up the entire time. And while having a name for my pain doesn't make it go away, I feel more at peace just because I know what to call it.