Feeling Discouraged After HEDS Diagnosis

Congrats (sorta) on the diagnosis. Glad you have a community to talk to. Good luck, you have access to more resources now with a diagnosis

I feel ya, went to the geneticist for something completely unrelated and got surprised by him being pretty sure I have hEDS and giving me SO much info about that. To make it easier on myself I started researching more, and honestly searching it on tiktok and seeing others find humor in their problems helped me a lot.

I REALLY feel for you. My health TANKED during Covid and I finally started seeing docs… I found out I have POTS, hEDS, MCAS and a HOST of other comorbidities. Realizing I was medically gaslit as a child by friends, family, doctors, teachers and professionals I’m aghast. It’s taking a lot of healing for me to swallow the “pills” of my diagnosis and realizing how disabled I truly am. However! We are the canaries in the coal mine my fellow hEDS friend!! 1 in 5,000 people carry this genetic disorder (whether or not in presents as badly as ours does…) and more and more and more people will wake up to this! More people will search for help and thus maybe one day cellular medicine and genetic medicine will find a “cure” for us! 🔥💞 that’s what I try to tell myself everyday that I think of kms from pain 🤷🏻‍♀️ sending so much love to you. These bodies of ours are trying so hard to keep us alive, I’m happy to make connections with others who struggle the same.

Woah dude! I have an appointment in January where I'll hopefully get an official diagnosis for heds! I feel ya on the aches and pains. My knee, lower back, and so many other parts of my body have been so finicky lately... or always. I'm proud of you for coming this far! You pushed through to advocate for yourself to get a diagnosis, even with the energy drain that is POTS and hEDS!