"I often get [asked] 'where does it hurt?'...Where should I start listing? From top or from bottom? I usually just say that everything hurts, and then specify the worst two places are my right hip and my right shoulder. And then I remember, 'well, actually my whole right arm is really bad, and actually my knees are pretty bad as well,’ and it goes on and on and on.” - Sofie, episode 31; EDS patient

"I often get [asked] 'where does it hurt?'...Where should I start listing? From top or from bottom? I usually just say that everything hurts, and then specify the worst two places are my right hip and my right shoulder. And then I remember, 'well, actually my whole right arm is really bad, and actually my knees are pretty bad as well,’ and it goes on and on and on.” - Sofie, episode 31; EDS patient

CW: eating disorder

31 Tough in Any Weather (episode page)
Description: In today’s episode I talk to Sofie about her experience in the Norwegian healthcare system as a patient with complex chronic illness. We talk about her experience trying to find a diagnosis that fit her symptoms, how EDS is classified and treated in Norway, and our complicated relationship with weather. In today’s bonus episode, we talk a little more in depth about the interplay between chronic illness and eating disorders, and about the ableism present in many diet communities.

[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.

In today’s episode I talk to Sofie about her experience in the Norwegian healthcare system as a patient with complex chronic illness. Sofie was one of the first international listeners to contact me, early on after I started the podcast, so I was excited to finally get a chance to really talk to her. As I told her in one of our early emails, the only things I knew about Norway came from the Netflix original series Lillyhammer staring Steven van Zandt of Sopranos and Bruce Springsteen fame, and the time I sat next to a lovely Norwegian couple at a wedding. I learned a lot more talking to her, perhaps most notably, that even in what is widely considered among the best healthcare systems in the world, her mysterious symptoms were still dismissed as all in her head. Norwegians! They’re just like us!

In today’s bonus episode, we talk a little more in depth about the interplay between chronic illness and eating disorders, and about the ableism present in many diet communities. Of course eating disorders on their own can be chronic illnesses, but they can also show up in the presence of a variety of other conditions and really complicate things.

Sofie also has Ehlers-Danlos Syndrome, and if you heard the last episode, you know that May is EDS Awareness Month. It’s also a bunch of other stuff awareness month too, and I’ve been tweeting episodes where we talk about those issues. You can find a link to the Storify of those tweets on the episode page. In a perfect world with an endless amount of spoons I’d have booked different guests with different conditions for each episode this month, but my world is wildly imperfect and I never have the spoons I need. I’ll have more episodes with Lupus, Lyme Disease, Fibromyalgia, ME/CFS, and all the other conditions featured for awareness this month in the coming months. We’ll get there, it just takes me a while. And hey, it helps keep the awareness going for the rest of the year, beyond just the awareness month, right? Sure, that’s what I keep telling myself.

In the last episode, I mentioned that I’d be at Periodic, Inc’s NYC Red Party on May 28th celebrating Menstrual Hygiene Day. Unfortunately their New York event was cancelled due to funding issues, but I will hopefully be Skyping in for a panel at their Portland, OR event, so if you’re near there, you should go! And on Monday May 23rd, I’ll be at Untabooed’s Proud, Powerful, Party! at LMHQ in New York as a Clue Ambassador. Untabooed is a wonderful organization that provides reusable menstrual hygiene supplies to low income and homeless menstruators in New York City, and they are celebrating their first birthday with this fundraiser. There will be food and panel and stuff, and I’m looking forward to it! So if you’re in the area, come to that!

As always find resources and more from us at insicknesspod.com and on social media @insicknesspod. If you’re an international listener who might be interested in talking to me about your experience on the show, shoot me an email at insicknesspod@gmail.com or use the contact page at insicknesspod.com.

If you can, please take a few moments to subscribe, rate, and review us on iTunes, which helps other people find the show.

And I hope you enjoy this episode…

[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.