Listen to this post:
I’m excited about the upcoming Oregon Ehlers-Danlos Conference. It’s designed for people who have EDS, want to learn more about it, or are medical providers looking for alternatives to giving some of the common responses people with EDS get. You know, time-tested stuff like this: “You don’t have anything wrong with you. It’s all in your head. You need psych meds because there’s no reason you would feel so tired for no reason. I don’t believe you that you dislocated three ribs. Your pain isn’t that bad. What do you mean you can’t eat? Just eat more salt so you don’t keep passing out.” And while I’m sitting here listing out the kinds of doctor lines that make me want to run out of the room sobbing (even though I’m often too tired to do that), how about this oldie but goody some doctors respond with: “You looked it up? Well, I’ve never heard of it. It’s not real.”
I love Anna Hamilton’s graphic novel about the intersections of feminism and blowing off women’s pain and medical concerns. She has an 8-part feminist analysis of chronic pain and invisible disability called “Nervous Systems.” I linked to part 8 because in that post, you can find the links to parts 1-7. And in honor of cross-disability access, each comic panel has a written description of the drawings and dialogue below the drawings. Yay! It’s a really impressive how she melds the academic research and citations with the down to earth personal narrative and graphics.
You can also check out Cara Gael’s podcast, In Sickness + In Health, where the focus is on EDS, dysautonomia, and a large range of other invisible and chronic health conditions. This isn’t the place for doctors to talk. It’s a place for people with lived experiences of health conditions to tell their stories of illness, wellness, treatment, knowledge they’ve amassed–and most satisfying for me–their disturbingly similar stories of being blown off and disbelieved for extended periods of time before finally getting a diagnosis and access to potential treatments. There’s so much self-advocacy, peer wisdom, and heartfelt, compassionate conversation. Anyone at all who wants more insider perspective on how these conditions play out in people’s lives should check this out!
It’s not about saying you should avoid doctors or that doctors are terrible people or do awful work. The point is to recognize that how we usually do medicine in the US devalues people’s descriptions and interpretations of their own lives and bodies. So this space honors the person living the life. Where guests on the show have positive doctor stories, they always share those too. At the moment, the website has partial transcripts of the episodes where you can read Cara’s narration and introductions. There are plans to have the whole interviews transcribed in the future.
The conference, though!
Conference details:
Saturday, October 22nd, 2016
Registration and check-in: 8:15 – 9:00 am
Speakers: 9:00 am – 5:15 pm
OHSU South Waterfront Campus
Collaborative Life Sciences Building 3rd Floor
2730 SW Moody Ave., 97201
Parking Available
General Admission: $20.00
Attendance with Certification of Completion: $50.00
Please be scent-free for this event, including using non-scented laundry detergent, deodorant, and hair and body products.
The conference organizers are looking into possibly offering real-time captioning, but I’m not sure yet. Please contact them if you have questions about accessibility at 503-292-5882. Visit their website for more conference info, downloadable flyers, and many more resources.