I have hEDS, and I find a lot of what is written or joked about in social media groups hard to read.

I just had bi-lateral sacroiliac joint fusion two weeks ago and had been asking on Instagram, Facebook, Reddit for months if anyone with EDS had had this surgery (no responses). But I feel like there are a lot of people that need to joke about their condition to get by. Instagram is the worst, it's all inspirational quotes. This, and many other conditions are not to be glamorized. All I want is to be able to go back to work and to do the things I love.

I go through periods when I'm good and when I'm bad. When I'm good, I can rock climb, SCUBA dive, snowboard... When I'm bad, I've been on bed rest for the nine months prior to the surgery to weeks ago, couldn't work, couldn't shower on my own. Healing from this will be about 6 months, and then lots of physio to get me back in shape. This is cyclical to a certain extent in my life. The longest bad period was 3.5 years, but not all bedridden. The longest good period (when I can climb/dive/etc.) has been six years straight. BUT this does not mean I'm not in pain. Good periods, my pain daily is a 2/10--that's just my zero. I don't know what no pain feels like and even though those activities hurt, I have to find joy in life when I can.

I just found this sub today, and it makes me sad that there are people like this that fake any condition. I think the only reason I wrote this is because I'm at the hospital getting my staples out and it means I'm one day closer to being in a better situation.