June is Men’s Health Month. Men can and do endure the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated symptoms and conditions. Even though EDS and HSD are underdiagnosed, they can be just as severe and debilitating, no matter your gender identity.
All individuals living with EDS or HSD deserve visibility, care, and support.
Learning to ask for help
“My body started giving up on me around five years ago and I was officially diagnosed with classical EDS (cEDS) towards the end of 2015. My biggest challenge—and biggest source of strength—throughout my time with EDS has been being a Dad. I was diagnosed with EDS after becoming a parent and since the diagnosis, we have had another child. Parenting is hard enough without throwing a chronic illness into the mix.
“I was fortunate to live a relatively normal life until I was in my thirties. I played competitive sports all through my childhood. I went to University and experienced all the excesses that involved. I traveled the world and I had a fulfilling career. I met my wonderful wife, got married, and we had our first kid before everything started going sideways. Before the chronic pain, chronic fatigue, anxiety, depression, and everything else that comes along with EDS. Since then I have really struggled with being a parent. It’s a struggle every day.
“As hard as these past four years have been, they have also been a tremendous learning experience for me. I have learned to soften. To be kinder and more compassionate to myself. While there is still a lot more work to be done and I can still be very stubborn, I am learning to ask for help, and learning my limitations. When your energy is limited, it really forces you to make decisions about where you’re going to expend that energy.”
Accepting myself and pursuing my dreams
“I was born in 1999 in Innsbruck, Tyrol, Austria. Born with musculocontractual EDS (mcEDS) and clubfoot was not easy, especially when I grew up and every other child could play football or some other sports and I couldn’t. “No, Markus you can’t do that – it’s too dangerous”. I couldn’t understand why everybody was saying that I couldn’t play with the other children. When we played football/soccer I was always the referee so that the risk of injury from a foul was reduced or minimized. In my early years, I could not understand that, and I want to be a part of the team of course.
“The compulsory school years passed and then I had to decide what I want to do next. I began an apprenticeship as an administrative assistant in governmental authority. Once again my past caught up with me and I felt reduced to my illness. In that part of life, I thought “Okay, I accepted I have a disease but physically not mentally.” In fact, that was the new motto of my life (after 15 years I accepted my disease… well, better than never).
“I swore to myself that I want to show everybody my illness shouldn’t be an obstacle in life. I said: “I want to go to university to study law”. Everybody laughed about that. After months of planning this project, I call it, I began to study for the entrance exams. So, four years after I had this repeat exam and thought I want to break up with everything, I got a letter from the University of Linz, which said I was accepted. I can’t describe these feelings – it feels just amazing to know everything is possible in life.”
Hope for understanding
“I’m 15 years old and I was born with Ehlers-Danlos syndrome. I was diagnosed in 2017 on my birthday. I’m born in a Black family that didn’t know about EDS and often told me to suck it up each time I had problems with my health, and the scars I gained from doing activities that were not made for people like me.
“I’m hoping my sharing this it’ll help a family just like mine to learn more and understand EDS. My diagnosis helped me a lot to understand what was wrong with me. I’m hoping some people will be lucky as me and get peace of mind. Ever since I was diagnosed I knew I had to fight for awareness to help other people.”
Diagnosis was my turning point
“I was playing soccer, qualifying for the Icelandic national team try-outs, and having to cancel due to injuries. I was injured most of my athletic career, I pushed through but I was in continuous pain.
“The mental aspect of being injured was, in my case, far worse than the physical aspect. I felt weak. I didn’t want to address my injuries due to shame. When I got my diagnosis, at 23 years old, a ton of weight was lifted off my shoulders.
Over the next seven years, I finished my Ms degree in physical therapy, sustained two cardiac arrests, and was hired as the physical therapist for the Icelandic men’s national team in basketball. I helped a lot of people, including myself, and became extremely happy and hopeful.”
Finding a reason for my pain
“I served eight years in the United States Army as a 12 bravo -Combat Engineer. We carry all explosives that you would need to clear or breach any obstacles in the army’s way. I always had issues growing up but never could find a reason for my pain and joint issues.
“During my last two years, I found a civilian doctor who happens to specialize in EDS. Boom, he had all the answers like he read a book about me, I couldn’t believe it! I now advocate for those with invisible disabilities, because I know the pain and struggle.”
Getting back control of my life
“Although diagnosed at 17 and being hypermobile Ehlers-Danlos syndrome (hEDS) didn’t affect me until I had a severe and dangerous prostate infection. This flared up my EDS.
“The urological challenges with EDS can be incredibly scary and frankly humiliating. But with the help of catheters, I’ve claimed that element of control and associated self-esteem back and can focus on my other symptoms.”
If you would like to share your story or practical strategies for managing your EDS or HSD please click here.
Connect with others by visiting The Ehlers-Danlos Society’s
Learn more about living with HSD/EDS by visiting The Ehlers-Danlos Society’s
