What a Person With Ehlers-Danlos Syndrome Has to Think About


What does living with EDS look like? Medicine for all kinds of pain, migraines, nausea. Knee, ankle, finger braces and back up braces in my book bag and car. Compression socks and essential oils. Books and handouts for relearning how my joints work. All kinds of physical and occupational therapy tools to work with.

What is living with EDS like? Ehlers-Danlos comes with multi-systemic symptoms so it’s never just one thing I have to think about. It’s about “saving my spoons” so I have enough energy to get through the day. Always being conscious of where my joints are, if I’m hyperextending them and correcting my posture so I can try to prevent further tissue damage. Having to keep up with all seven of my different doctors and their appointments.

I think about trying my hardest to stay awake and focused while fighting the chronic fatigue. Reading and asking about the ingredients in the food I’m eating because I can’t have lactose, fructose or gluten. About checking the weather to see if the cold will make my joints hurt worse or if the temperature change will give me a migraine or make my body hurt even more. About trying to stay away from other migraine triggers like certain smells and lights. Having to keep hydrated and not overdoing it in the heat so my postural orthostatic tachycardia syndrome (POTS) won’t act up.

I think about making sure I take all four of my daily medications and always keeping my “as needed” medicine for nausea, migraines, muscle relaxers and my inhaler near me. Debating on what braces, KT tape, medicine or other physical therapy/occupational therapy toys I should bring with me when I go out of town.

EDS is a lot of things that never stop and none of them are easy. EDS has taught me so many things. Most people go through their day without having to think about how their body works. They can walk up stairs, write notes, walk around town or campus and not think twice about it. But for me, I have to constantly stay in tune with my body.It has made me grow up, take control and be aware of so many things that other 20-year-olds would never have to think about. I’ve been told that I’ve got an old soul and I’m mature for my age, but when you have the body of what feels like a 90-year-old, I guess that’s what happens.

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