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My name is Rachel and I have classical EDS (cEDS).
I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and explained what it is in a very objective way, but I never dwelt deeper than that.
Searching ‘EDS’ in Instagram was shocking to find so many people who have it; to see there are others out there that care about it, was intense for me, raw almost. I always felt like having EDS was a part of who I am, a secret I had buried, an insecurity, but one that I never explored. It was just a nuisance to my life, and I don’t think I ever really came to terms with having it.
As I child, I always wished I met someone who had scars just like me, and who were scarred in the ways I had been, so I had someone I could relate to. As a teenager, having very visible scars all over my body made me feel extremely insecure. As an adult, trying to find a partner in life who could understand without being sympathetic or revolted by my condition, made me feel insecure.
I have now found someone who makes me feel fearless; an emotion that was foreign to me all my life. I have two beautiful children, one who has her dad’s genes and the other whom, my gut tells me has it. I haven’t gotten him tested yet, but my instincts tell me otherwise. Regardless, as a parent, I try to reflect what I wish my children to be; strong, fearless and much more.
Living with cEDS as an individual, I still feel insecure from time to time, but as a parent, I let nothing stop me.Tags: cEDS, Coping, Diagnosis Journey, Kids, Mental Health, parenting, scarring, skin
Categorized in: Stories