InsufficientSchemes Member Profile

...See more I've been having a lot of trouble with this for the past few months. My diagnoses are relatively recent (Ehlers-Danlos hypermobility, POTS, celiac disease) and while it should feel better to know why I can't do as much as everyone else... it hasn't felt super great to have doctors tell me "oh your genes are junked up, here's a long list of things you can't do, by the way having a baby will probably kill you so avoid that." My husband is amazing, my parents are amazing, but I still live in an area where I'm being given no kind of accomodations on account of the fact I live in nearly constant pain. It's not appropriate for you to have a handicap sticker, they say, because you can still walk; regardless of how often I sprain my joints getting out of vehicles or just walking. "You can still work, work from home!" like it's totally not hard to find work from home positions (i have one now, they just haven't given me any work in months, working from home is great and reliable 9_9) /s And I'll get through it. I'll cope, because I have to. Because this garbage body I live in is the only one I get and it's that or dying, and I didn't like how dying felt earlier this year. (Untreated celiac is apparently a good way to get your body to stop making blood and strangle itself slowly.) But me being brave and trying my best doesn't pay the rent. It doesn't make it any less stressful when I'm told I should get supportive joint braces and a physical therapist, when I can't afford either of these things. When I'm at the store and I start crying because there's so little I can eat safely there AND afford. When I take hours out of my day to cook for myself (because I have to) and swim (because I will get arthritis in my 30s if I don't) and still get told I need to step up my side hustle if I want to pay the bills. When my husband talks about moving to the cheapest nearby town with the least terrifying crime rate, far away from his job, and doesn't grumble about it at all (even though my heart is breaking because I know me not being able to work as much is the reason we're having to consider it.) I know it shouldn't make me feel like less, because all I can do is my best. But here, my best isn't enough. My best gets told, "You're not that bad off, you can walk, do better." And my best is already a daily struggle with pain and migraines and dislocated joints and crying; I don't know how much more blood they can get out of this stone. And I don't know how to be okay with that.

Bio

Recent forum posts

Talk to an expert therapist

Firstly congratulate yourself on reaching out for support! This is such an...

About Us

Get Started

Online Therapy

Terms

Bio