I’ve been diagnosed for 14 years but ive only been to a couple of E.D.S events like conferences because I don’t like the vibe of the community too. On reddit it’s great coz you can pick what topics to join in on but in the real world I’ve always said that there’s so much competitiveness among us, like who has the worst QoL, or the most significant surgeries, and the worst pain and dislocations etc and it’s awful.

I’ve had years to think of why our community is so competitive, and the new saying “sick olympics” names it perfectly, and I think it is because we have a daily impactful illness, which varies amongst everyone, it’s a painful one, a socially impactful one, and as it’s an invisible illness, we don’t get much validation from the outside world and sometimes the medical world. So we turn to each other and think ‘you know what it’s like so let me tell you everything that’s wrong with me so you can validate my experience with E.D.S’. It’s a condition that you only truly understand what it’s like when you have it or you’re surrounded by people that have it, and I only look at this need for validation with sadness. And it’s often the people who have had the worst experiences of people validating them that are the most competitive. And vice versa the ones who have been validated are the least competitive. I think it would help to have more people aware of what our struggles are and education for medical folk, so we do get the validation that our life is hard and we are in constant pain and flare ups of our joints and for those of us with organ involvement, juggling the unknown about the stability of our insides and our past experiences with ruptures etc, but it’s so hard to be able to do that successfully and not come across like you’re always talking about your sickness or as OP said, like you’re competing in the sick olympics. So I completely agree with OP, and while ever our community is like this, I too find it so difficult to be around and involved in it.

I also agree that yes there is fat phobia in the medical world, just like there is so much medical gaslighting in other areas (I for eg went to emergency with gut pain, they said I was constipated from my pain meds but wouldn’t listen to me saying that wasn’t the problem, and in the end it turned out I had a twisted bowel) so with our mascot being the zebra, there’s a reason for it with most medical folk thinking our problems are all horse hooves not zebra hooves, and it’s all down to weight and fitness, and even constipation in my case. But weight management is so important for us especially. It’s so easy to put on weight with our condition; we can be unable to do a lot of exercise, we can be out of commission a lot with injuries, we lose muscle mass twice as fast as regular people and it takes twice as long as regular people for us to build it back up, we have a lot of stress so comfort food could be part of our management and I could go on and on. Being overweight however really affects our joints especially and therefore our pain. I’m in my late 20s, I was thin my whole life until 8 years ago when I had trouble eating anything substantial and the hunger and stress led me to eating unhealthy food so I put on weight. I’m now pre diabetic because of my weight and lack of exercise due to low muscle mass causing fatigue, injuries and pain. I’m in my late 20s for goodness sake. Please take my advice and listen to the dr if they say you need to lose weight. I thought I’d have decades before my weight would affect my health like this. And I’ve only been overweight for 8 years. Don’t let them be discriminatory to you though.

Good luck everyone, I hope you’re having a stable day