“I am not my chronic illness”

Project Description:

Being diagnosed with Ehlers-Danlos Syndrome (EDS) was one of the best things and worst things that could have ever happened to me. Growing up, I was called everything from a hypochondriac to an attention-seeker. I was a wimpy kid who complained all the time and cried about everything. I lived in an abusive household, so life was already hard enough, but it was made even more difficult by everyone around me. My parents didn’t believe there was anything wrong with me; the few doctors I did see concluded I had growing pains or was making it all up.

I never really felt like I fit in, but I tried to fake it as much as I could. As I got older, the pain got worse, the fatigue was all-consuming and I had problems maintaining jobs, friendships and relationships. When I felt like I was at my breaking point, a kind and caring doctor finally listened to me and after a whirlwind of genetics appointments and being poked and prodded like a science-project, I finally had a name for my chronic illness. I felt like a giant weight was off of my shoulders; somebody finally believed me. On the flipside, I also found out there is no cure, treatments are limited, the illness is degenerative and I would face a life of struggling to find answers and help for a rare disease that most doctors have only read about in medical school.

It was glorious and deflating. Over the next few years, I tried to maintain some semblance of a normal life while my health went downhill. In time though, I lost friends because I perpetually had to cancel plans, I lost relationships because it was hard for a partner to be around someone who is constantly in pain. My mental health suffered; there were suicide attempts. It took several years, a lot of willpower, and help from a few good doctors, but eventually I was able to find a place where I can look at life as a blessing and find the good in each day, as opposed to looking at it as an endless string of dark days.

I am now considered disabled, but my spirit isn’t. I find light and love in art, animals, and my wonderful relationship. I try to take one day at a time and do what I am able, finding joy in the small accomplishments and love in all that surrounds me. I also have become an advocate for Ehlers-Danlos Syndrome awareness so that others have help in their journeys. I may have EDS and all the pain, joint issues, GI problems, heart trouble, and everything else that comes along with it, but there is much more to me than my chronic illness.