Today the eldest Little Dalek and I got referred to a local geneticist with a good reputation for working with EDS patients. hEDS (or maybe one of the HSDs) seems the most likely diagnosis to me. This doc is supposedly really busy, so it could be a long time before we hear from his office. But it was good to know that my family doc validated my concerns.
Last year, it took me about 15 minutes to diagnose myself with POTS. And it took a YEAR ruling out other things and dealing with multiple specialists and doing a bunch of stupid tests before I finally got the dysautonomia specialist in my city to get me in for a tilt-table test and confirm what I already knew. So I’m prepared for another long slog before I get an official diagnosis re: my hypermobility issues. But this is the first step in the right direction and I’m happy to have gotten the ball rolling.
And I want to say one more thing, because I think it’s important…
Awareness campaigns actually make a difference.
It was a “This is What EDS Looks Like” post on Tumblr, back during EDS Awareness month, that led me to this point. My POTS specialist had brought up EDS in my first appointment with him and I totally blew him off because I knew what it was and “I’m definitely not super flexible!” [EDS and POTS are very, very, very commonly comorbid so I had heard about EDS from fellow POTSies.]
Turns out, I just didn’t know what hypermobility looked like! When I saw that post and pictures of hypermobile joints I said “Wait, you mean everybody can’t do that?” Turns out I have all sorts of joint flexibility that isn’t normal, but I was so used to it that I thought everybody was that way.
So next time somebody complains about the internet and young people spending all their time on their phones and the Twitter or whatever, or complains about people using Dr. Google to self-diagnose, do me a favor and punch them in the face.
Access to almost all the knowledge in the world, and the ability to instantly communicate with people with different experiences can be life changing (and for some people, life-saving). There were hypochondriacs before the Internet. There will always be people who think their head cold is actually cancer. But for a not insignificant number of people, the Internet and social media can mean the difference between decades of heartache and lack of treatment versus answers and support for medical conditions even the average doctor is unfamiliar with (even if they SHOULD be more knowledgable).