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 regained consciousness, I was so scared and had no idea what had happened to me. I was so embarrassed I didn’t even tell my parents until much later. My coach said I was probably just dehydrated. No one thought I needed medical care, I just avoided running very hard for the rest of the season.
The following year I didn’t sign up. I sprained my ankle 5 times in one year when I was a senior. I didn’t seek medical care after the first one; I didn’t trust that doctors would believe me. I always knew that something bigger than I understood was going on in my body.
After I was married and pregnant with our third child, the pain in my joints was so severe that I could barely walk. Again, I didn’t talk to anyone about it. I was too afraid to speak up for myself. Later that year I had to have a hysterectomy because my internal tissues were tearing. I couldn’t believe this was happening to me, at 29 I was losing my fertility forever and I knew it was all somehow connected. Still, I didn’t discuss my fears with anyone.
Finally, last year I was once again in a position where I could barely walk and my fatigue made me unable to function. I had frequent syncopal episodes upon standing. My husband pushed me to seek medical care, I was diagnosed with HSD and referred to cardiology and gastroenterology, and advised to seek out a geneticist. I did and was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), orthostatic hypotension, and I’m still in process with GI.
I began physical therapy right away at a center that specializes in Ehlers-Danlos syndrome and hypermobility. One of the first things said to me by my PT was “I don’t think you’re crazy.” Finally, someone understood!
I began learning about how my body works. Suddenly all of the pieces fell into place and I began to see a clear picture. For the first time in my life, I began opening up to myself. I admitted that my pain was real and valid. The lifetime of pain and fear I had been holding on to had once felt so much bigger than me that I disassociated from it.
Now with proper care and acknowledgment from myself, I am learning to manage my pain. I am learning compassion for myself. I have hope. I am learning to hear, listen to, and even use my own voice!
