03 Accessibility Means More Than Ramps - Part One (episode page)
Description: In today’s episode, 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.
Hey there, welcome you 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 on this podcast or any of its associated should be considered medical advice, I want to be really clear about that. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, I’ve been there, but I wish you a lot of luck.
We’re all going through this together, but I can't stress enough how different we all are, even if we were to have identical medical files. There are so many factors that go into shaping a person's experience of health and illness. Just because something worked for one person does not mean it will work for you or anyone else. I want to ask my audience to respect the very personal decisions of my guests, and remember that the choices of others do not affect or reflect anything onto their own choices.
But Rebecca and I have an awful lot in common, we both grew up weirdos in the same tiny mountain town in Northern New Jersey, attended the same high school at different times, have many of the same diagnoses, and even saw the same doctor at one point, long after we had both moved away from home. We had so much to talk about, I had to split our interview into two separate episodes. Next week I’ll be posting part two, where we talk about Rebecca’s advocacy work toward accessible transportation in Philadelphia, some of the social and economic issues facing the chronically ill and people with disabilities, reconceptualizing disability internalized ableism, and diversity of disability.
[Rebecca talking about Victorian children's literature and being a sickly child]
Rebecca now lives in Philadelphia with their spouse, three cats, and a dog. When not yelling about ableism, they enjoy container gardening. In today’s episode, 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.
This is the third episode in a series of interviews with dysautonomia patients for the last week of Dysautonomia Awareness Month. We’re putting up a new episode every day, so keep an eye on your podcast feeds or find us at insicknesspod.com. If you want to learn more about dysautonomia, go back to episode 1, Dysauto-whatta?. Lauren Stiles, the president of the non-profit group, Dysautonomia International, gives a crash course on just what dysautonomia is, and we talk about diagnostic delay and some of the research her organization has been able to fund. The second episode in this series is with Ilana, a writer and patient advocate, who talks about failing alternative medicine, how she manages her career, blogging, the horrors of GI testing, crying in parking lots, and attempting wedding planning while living with a very unpredictable chronic illness. Later in the week, we’ll have two more episodes with other dysautonomia patients that have different primary diagnoses.
Like myself, Rebecca’s primary diagnosis is Ehlers-Danlos Syndrome. Sometimes it’s pronounced AYlers, sometimes its Ehlers, and sometimes it’s Eelers. The pronunciation isn’t really important. It’s not something a lot of people have never heard of. It’s barely taught in medical schools, and most doctors know almost nothing about it. It’s complicated and poorly understood, but I asked Rebecca to explain a bit about the condition to give you an idea of the basics.
[Rebecca explains EDS]
We talk more about EDS and its effects in this episode, and in next week’s as well. I hope you enjoy the interview, we had a lot of fun recording it.
We did get a lot of good stuff. So much so that this is only part one of a two part interview. Part 2 will be out next Tuesday, and we get into it on disability issues, and Rebecca’s activism.
Thank you so much for listening to In Sickness + In Health., I hope you enjoyed this episode. If you did, subscribe and stay tuned for everything we have to come, and check out our other episodes celebrating Dysautonomia Awareness Month that are up this week! We’ll have a new episode up every day. You can find us at insicknesspod.com and on Twitter, Tumblr, and Instagram @insicknesspod. Please rate and review us on iTunes, it helps other people find the show, and tell your family, tell your friends, and tell your doctors!
But most importantly don’t forget to be excellent to yourselves and each other.