Approved!

I have A LOT going on other than POTs, mainly physical damage that caused and greatly exacerbated my symptoms. I have done my own research, followed every protocol, implemented lifestyle changes, and still regularly see specialists and my PCP. I fought for a long time, years, to understand what’s going on and get treatment. I finally had to accept that I am a complex case who has a lot of medical issues that just normal POTs medications and accommodations aren’t enough for. I finally acknowledged I have a severe case when I couldn’t return to work. It was devastating.

That said, I was finally approved for disability, which is a monumental feat. I am (and have been) drowning in paperwork, but persistence pays off. If that’s the route you’re on, what helped me was to remember how many drs I’ve physically seen who know nothing about POTs, think it’s made up, or pass me off to someone else. It helped me realize it will be much harder to understand on paper and that patience is a must.

Incoming rant (if you want to skip): The most aggravating part of this journey (other than dr dismissal/gaslighting) is the amount of people who tell me they’re “jealous,” they “wish to stay home and do nothing,” and I’m “lucky.” I. Could. Scream. Being disabled is a part time job at best, full time job at worst bw all the medical appointments and procedures, all the paperwork for insurance, disability, employer ST disability (I had to initially go on), employer LT disability (while I waited), any work policies I wanted to keep….the list felt/feels neverending. I would MUCH rather be able to work, clean my house, cook a meal, enjoy social events, take a long solo drive…be who I was before. It’s scary, lonely, and TBH boring to be disabled. Even being approved, I feel so much guilt and like I am a burden to my family and friends. Most of the time I feel pointless, but there are big and little wins to celebrate. Disability approval is a win, but it’s also an acknowledgement of great loss, and those on the outside never experience that.