[image quote: "I felt like I was working 10x as hard to be half as health as the average person." - Rebecca, episode 30; EDS patient]

[image quote: "I felt like I was working 10x as hard to be half as health as the average person." - Rebecca, episode 30; EDS patient]

30 Fill in the Blank Awareness Month (episode page)
Description: This week’s episode is one to honor Ehlers-Danlos Syndrome Awareness Month, as well as many of the other poorly understood, under-diagnosed conditions that disproportionately affect women, which share May as an awareness month. This episode is actually a re-run of my interview with Rebecca from episode 03, but with an updated introduction and new links on the episode page. In this interview, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job.

[intro]
Hey there and welcome to In Sickness + In Health, a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.

Among several other important causes, May is Ehlers-Danlos Syndrome Awareness Month. And this EDS Awareness Month is especially exciting because as I record this, experts from around the world are gathered in New York for the Ehlers-Danlos Society’s International Symposium, working to reclassify the diagnostic criteria for all the types of EDS. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management. This is a VERY big deal for us in the EDS community.

The last time the diagnostic criteria was officially revised was in 1997, and for those of us for whom it seems like 1997 wasn’t that long ago, it’s actually been almost 20 years. We’ve learned a lot over those two decades, not only about EDS and many of its secondary conditions, but about medical science in general. I can’t wait to see what comes of this symposium. Having treatment guidelines for practitioners will also be really exciting because os many of us get diagnosed, and after the excitement or terror of finally having a diagnosis settles, we and our non-EDS expert doctors get a serious case of the Holy Shit, Now What?’s

So many of us remain undiagnosed for so long. I myself spent two decades wondering what was wrong with me, today’s guest, Rebecca, wasn’t diagnosed until they were 28. Last Friday, April 29th, was Undiagnosed Day, a day of awareness for those with health issues that have yet to be diagnosed. I spent the day tweeting some thoughts and episodes of the podcast that featured stories of diagnostic limbo, and you can find a link to the Storify of those tweets on the episode page.

Today’s episode is actually a re-run of episode 03. Sorry, but my chronic pain and fatigue associated with my own EDS is really poppin' off this week, as the kids say—do the kids actually say that? I dunno, I’m tired. But I love this interview, it makes me laugh a lot, and is really a great introduction to what it means for many of us to live with Ehlers-Danlos Syndrome. The original episode was part of the Dysautonomia Series we launched the podcast with back in October, where I talked to five different Dysautonomia patients who have POTS with different primary diagnoses. Check them out, if you haven’t heard them yet!

As I mentioned at the top, May is also the awareness months for a lot of other conditions and causes. I called this episode Fill in the Blank Awareness Month kind of as a jerky joke, but also a pretty accurate one. Awareness fatigue is definitely a thing, and simply being “aware” of any given illness or cause isn’t particularly helpful, and I understand why many people think awareness months, weeks, or days are useless. They don’t address issues of healthcare access, accessibility, or any other day-to-day challenges of real patients, but for organizations with limited resources—especially for conditions that are still very poorly understood, or no one’s ever heard of—a concentrated push for awareness is an efficient way of raising the profile of these causes, to move forward in dealing with these causes every other month of the year. A condition can’t get research funding or attention if no one knows it’s a thing.

Among the causes featured this month are Lupus, which Cyrena talked about in episode 13; Fibromyalgia, which is a condition of central sensitization, which we talked about in episode 11; ME/CFS, which I talked a little bit about in last week’s episode 29, and hope to cover more in future episodes; Mental Health, which has come up in several episodes, but which Dior talked about specifically in episode 12, and Heather talked about in episode 21; Lyme Disease, which we talked a bit in about in episode 24; Arthritis, various forms of which have come up in several episodes, including episodes 05, 10, 11, 21, 22, 23, and 27; and Tuberous Sclerosis Complex, which episode 25 guest, Nikki has, and will talk about more in a future episode that contains the second half of our interview.

Many of these conditions disproportionately affect women, and are very often dismissed by doctors and people around us as hysterical manifestations of psychological issues. That’s another thing that’s come up a lot on the podcast, and as we always mention, is total bullshit. That’s the reason I do this show, to continue the conversations about these conditions outside of their awareness months, and to have open and honest diaglogues about what they mean for the people they affect, and that they all are, in fact, real. I wish we didn’t have to keep saying over and over again that these conditions are real, and deeply affect the lives of those who live with them, but that’s the world we live in. And that’s why we’ll keep talking about it.

Speaking of bodily functions that the larger culture likes to pretend doesn’t exist, May 28th is Menstrual Hygiene Day. If you’re in the New York City area, I’ll be at Periodic, Inc’s NYC Red Party talking to people about periods. They'll have food, fun activities, samples of products and services, and a huge silent-auction style raffle. And I'm making fun stickers! You should come! They’re also hosting a similar event in Portland, OR, if you're in that area.

You can find a links to the episodes I’ve mentioned, the Red Parties, and other stuff we talk about in this episode on the show page. As always, find resources and more from us at insicknesspod.com and on social media @insicknesspod. If you can, please take a few moments to subscribe, rate and review us on iTunes, it helps other people find the show.

And for those of you unfamiliar with EDS, I’m going to let Rebecca explain a bit about the condition now:

[interview]

[outro]
Thanks for listening to In Sickness + In Health. Find resources and more from us at insicknesspod.com and on social media @insicknesspod.

And don’t forget to be excellent to yourselves and each other.