What would you do if you were in my situation
Hey everyone, I 21F have hEDS and severe POTs, the past year and a half (but especially the past 6 months have been incredibly difficult with my POTs). I’m essentially bed bound, struggle to cook, can’t grocery shop, can’t stand in the shower without passing out and am starting to lose hope of getting any better as I just seem to be getting worse. I’m terrified for my future and honestly am at a loss of what to do. My family is pretty poor and I was supposed to be the one to get educated and get us out of poverty but my health and mental health is so bad I’m considering taking some time off university (I’m online and only go once a week in person but it still feels like too much currently). I want to be educated and get my degree but with my health being so poor I’m not sure if this is the correct time and w the right degree. I’ve talked to my parent about this but the thing is if I take time off school we become more broke as my benefits and child support would be taken away. This would be the breaking point for my family as we’d no longer be able to afford monthly bills in the absence of that money so I’m not sure what to do. I’m starting low dose naltrexone this week and I’m hoping it helps because if not I’ll probably have a breakdown. I don’t want to live like this anymore and be so terrified of my future because I’m not in the physical condition to support myself and if I can’t support myself I can’t afford to live. I feel so frustrated, ripped off and upset that my health affected me so early on in life, there’s so many things I want to learn and do but it feels like I can’t. My mental health has been so bad recently, I’m starting to lose hope and not have the best thoughts (im okay but considering things like MAID in my 30s if I don’t get any better because what’s the point in living if you’re suffering, can’t afford to live and aren’t happy).
My POTs is so severe and it’s a 3 year wait for the dysautonomia clinic nearish to me. I can’t afford treatments that aren’t covered so it feels like a lifetime away until receiving help, I’m wasting my 20s away and doctors just keep bouncing me around without actually making my condition improve. I’m on propranolol yet my hr is still 150 when standing.
What would you do if you were in my situation or what things have helped your POTs?
Posted Mar 2, 2026, 4:01 PM UTC