My EDS Challenge Day 16- Coping in Life with Ehlers Danlos
- May 16, 2021, 8:45 p.m.
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.
This one is a hard one and I’m pretty sure I’ve touched on a lot of this already. Having a chronic illness with no good treatment options and or cure and not even a lot of research (this is changing) has been one of the greatest challenges of my life. It forces you to redefine or question everything, including the following:
-What it means to excersise
-What a “successful” romantic relationship looks like
- How do I socialize and feel less alone when I cant really do a whole lot?
-What does it mean to be a productive member of society?
- Am I just a burdeon or bringing everyone around me down?
- What if loved ones or doctors dont believe me since not a lot shows up on testing?
-Not beating yourself up constantly for not being able to do normal people things.
-Redefining your lifes purpose. This one is hard because it may leave you feeling helpless. Everyone has a vision of what they want their life to look like from a young age. career, relationship, family, travel, fun. EDS forces you to live within its parameters and not yours. Dreaming about things you wanted to do hurts your own feelings.
As you can see, this creates a lot of inner turmoil on top of the physical pain and unpredictability of our already defective bodies. Coping includes a whole host of physical and mental strategies. I spoke about a list of mental challenges I cope with. Here are some physical ones:
-Muscular atrophy due to fear of too much activity.
-Inability to gain weight because of fear and pain of eating.
- Fear of drinking too much because of post void bladder pain.
- Pelvic alignment
-Vessel issues & POTS symptoms
-Am I going to have new symptoms?
-Will I be able to get to a new appt or in public to take care of xyz?
-Not being able to sit for long periods or drive.
-How will I get on disability since I cant work full time? Will I be able to live on my own ever?