Hi, my name is Jasmine and this is my story of living with EDS.
Growing up, dance was like oxygen for me, I needed it to survive. I was dancing six days a week by the age of 9 and dance was my passion. I was constantly told by my dance teachers that only weak people felt pain and that if I wanted to be a good dancer I had to fight through it. I would be at the doctor’s office every 2-3 weeks, being told yet again that I had sprained my ankle.
As I grew up I started swallowing my feelings about how I was hurting and I told no one when I was in any pain. My parents said they were done taking me to the doctors. My pain became so excruciating that I couldn’t focus in class. In middle school, I asked my parents to take me to the doctor one last time. Anytime I was at the doctor’s they would only validate the pain in one part of my body, leaving the rest of my body suffering. I missed school for X-ray after X-ray, and MRI after MRI. My parents were running out of money and we were losing hope. I met with more specialists, after a year of appointments they told me that I needed ankle surgery. I went through with the surgery because I thought it would fix everything when really it made everything worse. I had to stop dancing for 6 months, leaving me feeling lost.
I went through months of physical therapy, still in excruciating pain as the doctors told me that I would be healed. After another 7 months of physical therapy, they told me there was nothing more that they could do. I was angry and confused. I prayed every day to not be in pain, begging God that my doctors would find an answer. The pain was consuming me and I felt that my life was over. At my check-up, I told my primary doctor and they recommended me to yet another physical therapist, only for them to tell me the surgery did not work and it wouldn’t have in the first place. He hopped around the diagnosis and sent me to yet again another doctor.
The doctor told me that I had Ehlers-Danlos syndrome (EDS) and the only question I wanted to know the answer to was will I ever dance again. She told me that I would have to stop by the age of 16. I am 16 now and I am more determined than ever to keep dancing. I have danced in New York City and I will never stop. I have tried physical therapy, hydrotherapy, steroid creams, pain regimens, and even steroid injections. The doctors say that am I maxed out on pain medication and they won’t give me any more medication because I am 16. I have been diagnosed but they don’t know to what extent my EDS has had on my body yet. My insurance has declined every test requested by my doctors leaving me with more unanswered questions.
When everyone’s answer is “there is nothing more that I can do” it is up to us as a community to support one another. I work every day to channel my pain into passion when I dance. I always tell myself that my pain is not my weakness, my pain is what gives me strength!
