The Unpredictability Of Ehlers Danlos Syndrome

The Unpredictability Of Ehlers Danlos Syndrome

Ehlers Danlos Syndrome has stolen my ability to plan for my future; but it has expanded my ability to see the beauty in each day.


When I was younger I had everything planned out. Whether it was tomorrow’s outfit, the weekend’s social calendar, or my plans for college and beyond, it was planned. I know not everyone feels the need plan it all out like that, and I do enjoy some spontaneity, but in reality, most of us have some degree of certainty in what our future—whether that be tomorrow, next week, or next year—will hold.

When I got sick, I gradually lost my ability to feel certain in any kind of plan. Ehlers Danlos Syndrome and Gastroparesis stole my ability to plan for a future. EDS is unpredictable. Unforeseeable. Uncertain. How can I make plans for the future when I don’t even know how to plan for today?

At any moment EDS can cause me severe pain, fatigue, nausea, and a myriad of other symptoms that leave me bed bound and non functional. My condition is progressive and there are no successful treatments to stop it, only medications that help manage the symptoms. I live each day hour by hour, just hoping that I’ll feel better as each day goes on, but knowing there’s a chance things could go south at any moment.

I can’t plan a day ahead without knowing there’s a chance I’ll have to cancel plans. I’m not reliable, but that’s not my fault. I don’t know if I’ll make it back to school, if I’ll graduate, if I’ll have a job. I don’t know if I’ll get married or have a family. My future is one giant question mark. Right now, I’m just happy to be alive.

EDS has changed my life, but it has also helped me see things in a new perspective. Each day is a gift. Every happy moment, every laugh, every smile, every breath is a gift. Never take life for granted. Tell your family and friends you love them every chance you get. Talk to your crush. Adopt a dog because you’ll save two lives by doing so. Always watch the sunset. Find joy wherever you can and have no regrets.

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