Tag Archive: Coping
I have lived my whole life with Ehlers-Danlos syndrome (EDS), I don’t know what “normality” is. My whole life has revolved around my disability, my friendships, my relationship, and everyday life. Growing up, I was always that odd one out because of my disability; I had to wear special shoes at school that mostly got […] View page
CW: Contains discussion of self-harm When I was 15, my mother took me to a pediatric gastroenterologist. I had been struggling to keep down food for two years: I had been diagnosed with gastroparesis and I had started to struggle with body dysmorphia. When the Gastroenterologist came into the room, I was pulling at my […] View page
I had spent most of my life so far being very active. I lived to help others. I cared for the elderly, children and disabled. I taught gymnastics for 20 years. Now the tables are turned. It’s me who needs the care and I struggle with this new role. It feels foreign to me, this […] View page
My greatest barrier with Ehlers-Danlos syndrome has been finding my own voice. Symptoms started as a young child with unbearable leg pain at night. Then, in high school, I began having many gastrointestinal issues. I still wanted to participate on my school’s cross country team; one day while running alone I lost consciousness. Once I […] View page
Recently, I was described by a friend as “the healthiest looking sick person” they knew. It was meant as a compliment, and I thanked them. I may look like a fit and well twenty-two-year-old woman, but in actuality, I am living with a disorder that consistently causes pain and hinders my life. It wasn’t until […] View page
For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered. When it came to my muscles, they […] View page
In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have excruciating pain in my back. I went to physical therapy and was told it was normal. At 36, I had my first spinal surgery, a […] View page
My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed […] View page
Finding appropriate healthcare has been a nightmare. Not only do doctors not know about EDS in order to diagnose the disease, they know even less about how to treat the symptoms. My daughter was hospitalized and later diagnosed at the beginning of the opioid crisis (2017). Because of the new rules they “could not treat […] View page
I’m Evy and this is my EDS story. I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but I […] View page
