The last 7 months have been a bit of a fact finding whirlwind..... an emotional roller coaster that has taken me for a ride. First I felt relief and satisfaction that I had figured out the mystery of my many health issues. After a bit of research I felt overwhelmed and sad by the difficult road ahead. As I visit with doctor after doctor to determine baselines and discuss a game plan for my future care I have slowly found myself accepting that which I cannot change with a new found resolve. I am comforted by the fact that my findings will help my younger relatives live more of their life. Through awareness they will be able to avoid lifestyle factors that could jeopardize their health if they find they have indeed inherited EDS.
Like many others I spent Thanksgiving surrounded by relatives.
My recent diagnosis of EDS made it seem that much more important to load up myself and my newly acquired knowledge and travel the four hours to Oklahoma to see my family. Much to my surprise,my health was not a topic of discussion. Ehlers Danlos Syndrome was to be the 500 pound gorilla in the room that everyone ignored. My niece and nephew, both new parents, hadn't heard of the newly discovered genetic defect growing on our family tree. My beautiful and curious 21 year old cousin asked "Is this something I should be concerned about?" Why hadn't this information been shared with them? Why wouldn't you want to spare others pain by empowering them with information?
I drove home another four hours pondering this question. No good answer came to me.
It is frustrating to reach deep in your heart, past the sadness, to find the silver lining in a less than ideal situation... only to find that nobody wants to see it.