"Postural Orthostatic Tachycardia Syndrome"

I was diagnosed with POTS 7 years ago. Since then I have had to leave full time employment because I was becoming unwell so much. I don’t know how many times I’ve been to my GP and all that’s been done is make changes to beta blockers. I’ve seen two cardiologist and they had no advice to give me that I didn’t already know. I work as and when I can, and I am now struggling with that. I feel that absolutely nobody understands how unwell I feel at times. I am bed ridden and can be for up to a week each month. My employer doesn’t understand and other health services tried to tell me some of my symptoms weren’t on the POTS website.

I have no idea what triggers an episode (apart from stress) and work cause me extra stress by lecturing me if I cancel shifts. I was told in the past when I got a new post, it maybe wasn’t suitable for me and I should go elsewhere. This shattered my confidence. My manager did not believe I had POTS because it’s not something widely spoken about. I became depressed as I felt like a fraud.  I also obviously worry about money, I need to earn. I have a friend with Crohn’s disease and they don’t get the same treatment, there appears to be more understanding with a disease like Crohn’s. Why should my condition be treated so differently?

My quality of life is so at times poor and I feel all alone, trapped in a body that doesn’t work. I get terrible upset stomachs when I’m unwell which makes makes need the toilet when I stand up, but I was told this is “just” a symptom.  I don’t know where to turn and would like to try and save some money to deal with this privately because I can’t continue like this. Any advice would be appreciated.