Despite Its Many Downsides, Occasionally EDS Opens New Doors

As a teacher, I’m incredibly lucky to have extra time off work around Thanksgiving. It gives me a few days to recharge from the constant chronic fatigue of Ehlers-Danlos syndrome (EDS) before the holiday season kicks into high gear. Since I typically head to my parents’ house, about 45 minutes away, and we keep Thanksgiving low-key, the holiday is a great opportunity to catch up on sleep and enjoy my horses and a few last days of nice fall weather before full-on winter arrives.

With this being my first holiday season with so many food sensitivities, I wasn’t entirely sure how it was going to go. I’m lucky in that my family is superaccommodating, and they’re happy to set a dish aside for me that won’t have butter, use oat milk in the mashed potatoes instead of regular milk, or even make something else for me entirely. That made Thanksgiving surprisingly easy, and quite tasty, too!

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I’ve been wanting to learn to cook some dishes that aren’t familiar to me, as they include foods I can eat but don’t know how to prepare well. I can eat seafood, for example, but I never ate much of it or learned how to cook it because my mom is allergic to many types of it.

I got the opportunity: My sister-in-law and niece are in town for an extended visit, and she cooks seafood regularly. Last weekend, she showed me how to steam, broil, and pan-fry fish. Not only was it great for me to learn, but it was also a lot of fun doing it together.

In addition to seafood, I learned how to make homemade chicken and vegetable dumplings, as well as Korean-style sushi, called gimbap, which is often made with cooked items instead of raw. While I’m not typically a huge fan of the seaweed flavor of the wrappings, I was pleasantly surprised by how much I liked it. And as a bonus, making them was a lot of fun, too!

While I would’ve been happy to cook and learn with my sister-in-law regardless of my food sensitivities, I’m pretty sure I would’ve seen it more as a passing day of fun rather than a learning experience. I know that I’ll make several of the dishes she showed me how to prepare, and it’s expanded my culinary options with fun new flavors.

Many aspects of living with EDS aren’t fun: the chronic fatigue, the inexplicable pain flares, and, of course, the dietary issues. But sometimes those limitations also allow me opportunities to learn or experience things that might be new to me: the kindness of the person at a local restaurant, helping me navigate its menu; a day of cooking with my sister-in-law; steps to prioritize self-care.

Those are all lessons I’ve learned or experiences I’ve had related to my EDS. It’s important to recognize the wide array of difficulties — and their severity — that those with EDS face daily, so that we don’t ignore them. But for me, maintaining a sense of realistic positivity is also critical to keeping a bright outlook and finding the best path forward.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.