So in July I diagnosed with POTS and in August I got formally diagnosed with hEDS after years of being ignored by a lovely geneticist. This has been great as issues I have had with my stomach which have been written off for years as IBS or soft tissue damage or the ever present oh you are just stressed are being looked into properly. It does help they have got a lot more noticeable as soon as I hit my twenties.
I am now 24. Every time I have to ask for accommodations, or use a mobility aid I either feel terribly sad or like a fraud. There is no in between.
I am going to the EDS conference in Edinburgh next weekend and I just booked my assistance and to Mexico in December because winter is rubbish for my pain and fatigue. And now I feel a mix of a fake and sad.
I am also going to apply for a blue badge later. My POTs and low blood pressure is great when I am sitting down now and the medication my cardiologist prescribed has helped with brain fog at my job but as soon as I start standing again I feel drunk. Which is awkward when I am on my own and I stop dead in carparks... or forget why I am here and have to check my list. Not to mention the crushing fatigue or the pain in my joints on bad days which are more frequent now.
Anyone alternate between feeling like a total fake and shouldn't be making such a fuss and then sad about the whole thing? On one level I know logically that the more things I get help with now and the less damage I do while I am young the more chance I have to not end up like my Grandfather and by extension my mother (although I seem to have more symptoms that she does weirdly). On the other hand my Dads attitude to all my complaining about pain, sore feet and feeling faint was that I was unfit and faking to get out of things and I needed to toughen up.
My Dads attitude is bad and I know it though. He has this blood disorder that can affect the eyes and cause blindness if not treated quickly and he knowingly left it on Monday hoping it would go away risking his sight.... So I guess it is a bad coping strategy.
I applied for a part time post graduate course in Law and that is exciting but if I didn't have hEDS/POTS (probably MCAS and my neck keeps cracking and trapping nerves that lead to my arm) I would have liked to have gone to medical school. That makes me feel sad.
This has been a bit of vent? By final thoughts are, is this imposter syndrome from years of being treated like a hypochondriac. Anyone else feel alternatly like they are faking or sad that they need the help in the first place?
Thanks for reading if you made it this far.