MY EDS Challenge Day 10- Coping & Grieving in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 10- Coping & Grieving

That’s me.... before…

Coping with chronic illness is a learned process that nobody prepares you for. I have ideas and visions of what my life was going to be like and then one day I woke up with crazy symptoms that apparently decided to get worse. I feel like I have taken 2 steps forward with doctors only to find that I was never on the right path to begin with. Had I known what I had, I might have ruled more things out by now. I feel like I am treading water while I was trying to work a 40 hour a week job, maintain relationships, and go to doctors appts. I was waiting patiently for doctors to test me for things and find that thing and then I could do treatment or medication and get better. But after too many years I found out that the symptoms I have, there is no fix for only ways to cope with them. Worse yet, I am suffering what seems like a silent fight because I look fine and even good on the outside. I find out that I am not alone in this silent fight, that there are so many zebras out there fighting their own battles the same as me. I’m not sure if this notion makes me feel comforted or breaks my heart all over again. Maybe both.

I have to grieve the loss of the life I wanted to live every single day. I wanted to travel more and to be able to leave my house and not have immense anxiety for what symptoms are going to come and ruin my plans or make me too tired. I figured I would have a close knit group of friends by now that I could do social things, my ride or die people. But everyone is off living their own lives. They are getting married, buying houses, starting big careers, having kids. I didn’t necessarily want all these things but I wanted to have the energy to have more. But I have to grieve the loss of that vision. And the process is not linear. Some days I think I have embraced my new normal and there are good parts of this normal. It forced me to slow down and listen to my body. But every now and again that sadness for what I once had and is no longer hits me out of nowhere.