When Pain Makes You Mourn Your Future | Ehlers Danlos Syndrome
When Pain Makes You Mourn Your Future – In the past 6 months I went from being a thoroughly healthy 22 year old on a teaching fellowship in Thailand, to moving back in with my parents and battling debilitating pain as my full time job. I transitioned quickly from navigating my post-college life in a new culture, to navigating how to get help for my Ehlers Danlos Syndrome. In that time, I’ve started becoming familiar with the wild cycles of grief and acceptance.
Some days it’s fear—fear that comes in waves. What if I never get better? What if I’m never well enough to work outside my home? What if I can never get pregnant? What if my condition causes my partner to stay with me out of sympathy? What if my pain swallows my life and I never live? What if I wasted my whole youth preparing for an able-bodied future that I will never have?
Other times I’m at the mourning stage. When I first came home, I mourned having to leave my kiddos in Thailand, being torn away from my new community with no closure. But the longer my condition lasts, I mourn my future. Going out and dancing with my friends, moving somewhere new, beginning my career– I mourn it all.
Other times it’s clear to me that I can’t put my life on hold just because I can’t live it in the ways I want to anymore. Maybe I’ll get better, but maybe I won’t. The bottom line is that this is my life now. I need to modify my expectations, and be creative in finding ways to still do things I love. That’s my acceptance phase. On those days, I hang out with friends, call my grandma, try out a new recipe. Maybe I send out a remote job application or make a protest poster for someone with a more able body to march with. I hurt pretty bad still on these days, but I try not to dwell on it. I accept it. I’m grateful to be having more and more days like this.
But some days I just can’t handle the pain. Today was one of them. I know movement helps with pain relief so I went on a slow, short walk. By the end I was so fatigued and in so much aching pain. So I took my Tramadol and laid upstairs in my usual side position with a pillow in between my legs. The pain had taken all my energy. I passed out in an instant, with only moments of energy to cry before going unconscious.
Rinse, wash, repeat.
Written By: Miriam Kelberg
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When Pain Makes You Mourn Your Future