Living with painPosted April 13, 2022
My name is Kyle Fries and I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when I was 14 years old.
I have had problems for as long as I can remember. I have flat feet which uses to wake me up crying to my mom wondering why I was in pain. My mom was diagnosed at the same time as I was, but I didn’t realize the massive affected it would have on me.
I had to stop playing sports which broke my heart and I didn’t understand why I had to be different from the other kids. during my junior and senior years of High School.
I had three surgeries. The first surgery was on the labrum in my hip because it had torn and needed to be repaired. After that surgery, it was months of physical therapy (PT) twice a week. Later on, in the same year, I had to have shoulder surgery due to the fact my shoulder kept popping out of the socket.
By the time my senior year rolled around I was still in pain in my hip and wasn’t sleeping at all. I went and had another hip surgery to fix whatever issue I had with my hip/labrum. When the surgery finished I was told that my labrum had turned to bone and they need to remove part of it and replace it with some donor tissue. This was a shock to me because I wasn’t told that this was even a possibility. I had to endure more months of PT even after going twice a week for two years straight.
Once my senior year had ended I realized that my hip still was in a massive amount of pain enough to keep me up every night. Today, I am at college as a freshman trying to get by day by day. I am stuck in bed most days not wanting to get up and go to class or even talk to people. I find it so hard that no one around me understands what I am going through especially because it is an invisible disease.
Kids my age aren’t very nice or understand and normally don’t realize the severity of my pain. They see that I look healthy and walk fine, but I am always in pain and not able to sit for longer than a half-hour.
I see a pain specialist and plenty of other doctors but nothing has seemed to fix my hip pain even as I write this. I hope that eventually, I will find a way to combat some of the pain and learn to live my life. I want to do something I enjoy in life which I am struggling to find as I get through each day. The stress of passing my classes, picking a major that suits my body’s needs, as well as learning to accept myself and my disease, has been a massive struggle in my life but I believe that eventually, things will start to work out.Tags: hEDS, Pain, physical therapy, school
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