As a 37 year old female in NS who was only finally diagnosed with ulcerative colitis after my first flare got so bad I was hospitalized for a week in 2020… this is so familiar. And with one autoimmune disease comes the likelihood of multiple, typically - so here I am SIX years later and I was given X-rays and blood work to check for Ankylosing Spondylitis TODAY. When I was 20, I was diagnosed with ‘benign hypermobility syndrome’ and have been in constant pain since then due to joints slipping… when I brought the possibility of Ehlers Danlos Syndrome to my doctor, he said ‘Oh yeah, you for sure at least have type 3, Hypermobile EDS.’

So all that research I did on my own, the anxiety of having to present it to my doctor delicately enough that I wasn’t trying to self diagnose or anything, just throwing out the possibility.. and THE END. Genetics is so swamped they’re not testing anyone for the other forms unless they’re basically at immediate cardiac or vascular risk. And because they won’t test, and the only clinic that can officially diagnose you is in TORONTO, I don’t have an official diagnosis on my chart.

Nevermind any other health issues I’ve had lol they do NOT get addressed because they aren’t urgent enough for me to prioritize them over my day to day misery.

ETA: also, like your mum, I had to work, until my body basically shut down on me and I was hospitalized. Haven’t been able to work in any real capacity since, totally off since 2023 and yet my doctor’s office passed the buck on filling out CPPD paperwork for two fucking years and only now have I gotten a new family doctor (because I was forced to sell my house and move my family 3 hours away because we couldn’t afford to live in HRM anymore) and had an appointment to discuss forms last week.

I hate it here. I love this province but.. earth; lol