i don’t know what to do anymore

This is so depressing LOL but i really feel like i’m at a dead end with this now. I’m only 18 and feel like i’m so behind everyone else. I was diagnosed with POTS in September this year. Before around June, I didn’t have particularly bad symptoms. This is around the time i started to get nauseous a lot of the time. Now it feels almost constant and it’s so debilitating.

Bit of background on me, i am severely emetephobic. Like for as long as I can remember, the thought of being sick absolutely terrifies me.

I’ve been in hospital 3 times now since being diagnosed as i become so unwell with viruses etc that health professionals suspect sepsis and have to rule it out. Honestly at the moment it feels like i’m constantly unwell and i’m struggling mentally as I just feel like I can’t escape my illness. Every time I flare, I lose my appetite and feel extremely nauseous which makes me spiral 10x more because I panic about being sick. Each time i’ve ended up in hospital, i’ll go days without being able to eat which eventually turns into me being unable to drink and I have to get IV fluids and anti sickness.

I’ve had to stop working almost completely, I barely socialise anymore and I just feel so miserable all the time. I was someone that never cried prior to becoming ill and now it’s all I want to do. I see photos and videos taken around a year ago and grieve so hard for the person I used to be. I’m constantly so exhausted, my body hurts all over and I just never feel ‘right’. I’m awful at taking medication due to being neurodivergent so that’s not really an option. I was in hospital like last week with a kidney infection (although i’m being told now that all of my tests are coming back normal??). I just feel like i’ll never recover from any of this.

I trialled ivabradine for 3 days before i became too sick to be able to actually take it anymore and was struggling to actually breathe whilst taking it which made me anxious so i’m off that now and currently prescribed cyclizine to help with the nausea but as soon as it wears off it hits me like a tonne of bricks again and i’m back to square one.

It’s just so hard trying to make people understand. I feel like such a burden on everyone. I had family members sending me paragraphs last month accusing me of not eating and drinking for attention and giving everyone a hard time when in reality flares make this near impossible at times especially when I feel so sick. Being told you’re trying to off yourself when it feels like you’re doing everything you physically can to help yourself get better doesn’t help LOL.

I honestly wonder if this is something beyond just POTS. I know there’s a lot of comorbidities that tend to surround POTS but they seem to overlap a lot. Is there anything I should ask for from the doctors? Autoimmune tests? I just never feel right anymore and it feels beyond pots.