“He who has health has hope, and he who has hope has everything.” — Arabian proverb

In my teens and early twenties it seemed like every doctor I went to added to the growing list of things I could not or should not do because of Ehlers-Danlos Syndrome. It seems that those who don't have hypermobile joints don't think it is advisable to try anything that could stress those joints, risk injury or worse. Oddly, I preferred those responses at the time to the other responses I was getting that my pain was in my head, I was exaggerating it or that I was self mutilating for attention.

Even though I was in pain. Even though I was using braces, splints, crutches, a walker, a wheelchair, compression garments, painkillers and/or supplements, I had hope. Hope that the next test would show something easy to fix was the cause of the discomfort. Hope that the next treatment really would make the pain go away. Hope that the next doctor would truly listen and care. Hope that the next splint or garment would be comfortable AND beneficial.

In my thirties my hope was whittled away by healthcare providers dismissing me and my predicament for a variety of unreasonable excuses. Sometimes saying that my symptoms were something that I'd have to live with. A few providers simply said my symptoms couldn't be addressed by their skillset (i.e., I'm a surgeon and you are not a surgical candidate). As I was able to do less and less physically, I eventually had to stop working for a paycheck. I lost my identity as a professional working person. I felt like a lost, lonely, unimportant, insignificant person now burdening others with the expenses for my care. Looking back I see that I was losing Hope.

My body was falling apart when one of the best doctors I ever had told me I needed to rewrite my job description to include physical therapy exercises, time with family and friends, maintaining a healthy diet and finding the joy of every day. At the time I was angry that everything I was had to stop and be recreated. Looking back, I see that this wonderful caring physician actually laid a solid foundation to restoring my Hope.