By Paul Byrne-Moroney
I had a secret. I kept it from my family and friends for more than 20 years.
I had always known I looked different from other boys and men, including my brothers, but I didn’t know why. I avoided any situation where my body would be exposed such as swimming, sports or intimacy. For years I had a recurring nightmare that an intruder would enter my bedroom, pull back the blankets and laugh at my body. Then I attended a yoga course called ‘Freedom of Fear’ and found the courage to seek answers. Five months later, at 28, I attended a health clinic, was diagnosed with Klinefelter Syndrome and began the journey of recovery and self-discovery.
My first challenge was to talk to my family about it, something I had feared doing since I was a teenager. From there I slowly grew to accept and embrace what made me different, built self-confidence and respect, and developed strategies to transcend my limitations. At 35 I went to university, passed with honours and now work for the State government. I have also become an advocate for other men with the condition.
Klinefelter Syndrome results when a male child (normally XY) retains an extra ‘X’ sex chromosome becoming XXY. It is the most common sex chromosome condition affecting males, occurring in 1 in 600 births. As I would later learn, it was the cause of my poor academic and physical development and years of fear, anguish, depression and a serious back injury.
The condition causes lifelong low testosterone levels, childhood developmental delays, poor musculature, feminine fat distribution potentially including breast tissue, hypogonadism or small testicles, and infertility. Affected individuals may have learning disabilities and psychological issues, including low self-esteem and higher risk of depression. Having Klinefelter Syndrome also increases the risk of developing chronic health conditions such as diabetes, prostate cancer and osteoporosis. Testosterone replacement therapy goes some way to managing these, but many symptoms are irreversible.
I struggled academically, having difficulty with simple math, reading and memory. The stress that came with comparing my abilities against my fellow students was excruciating. Growing up in a neighborhood with a large percentage of boys from European and Mediterranean backgrounds didn’t help either. These masculine boys developed more quickly, which further reinforced, in my mind, my difference and, to be frank, deformity.
I avoided sports, because attending meant exposing myself in locker rooms and my lack of strength and coordination meant embarrassingly poor performance. If my family went swimming I insisted on wearing board shorts instead of bathers and would exit the pool and change before my father or brothers were ready to do so. At 25 I ruptured a disc, which has kept me sedentary ever since.
However, I have always been a walker. When I moved to Australia’s capital city Canberra to work in federal government in 2009, I began to walk to work, go to national parks on the weekends and started thinking about something I had always ruled out due to my past injuries and inabilities.
From 2005 to 2007 I volunteered for Oxfam Trailwalker, an annual endurance event in Melbourne, Australia, where teams of four walk 100 km within 48 hours across national parks, over mountains and through the night. Oxfam is not a relay. All four members must walk the entire 100 km. I volunteered as a checkpoint coordinator and seeing the walkers exhausted and injured after 70 km or falling over the finish line, I never in a million years thought I would participate as a walker.
Nonetheless, all that walking allowed me to dream and in 2011 the dream became a reality. I formed a team, The Wandering Hillbillies, and we all completed the event. We also raised over $10,000 for my favorite community development organisation, Oxfam Australia.
This year in May I not only completed the event with my newest team, Blaze the Trail, I did so for the fourth consecutive time and raised a further $5,300. Not bad considering I completed my third Trailwalker in 2013 after suffering pneumonia and a substantial pulmonary embolism the year before.
So far my four teams have raised over $20,000 for Oxfam and plans are already afoot to enter my fifth event next year. My team mate Lucie shared, “Thank you for your amazing leadership. I am really proud of what I’ve achieved, but I couldn’t have done it without you. I would absolutely love to join you next year.”
While overcoming self-perceived limitations adds to my drive to do this event year after year—did I mention I’ve also lost 25 kgs?—my true motivation is raising funds for Oxfam Australia. l now work as a cultural heritage officer with the State Office of Aboriginal Affairs and Oxfam empowers Indigenous Australian and overseas communities to overcome poverty and injustice and to recover from natural disasters. Oxfam was among the first aid agencies on the scene following the 2004 Indian Ocean Tsunami and have been there for all subsequent disasters in the region.
The event is now over, but donations can be made until 31 May on my team’s fundraising page. You can also visit the Oxfam Australia website to learn about the organisation’s projects.
In learning to overcome the challenges of having Klinefelter Syndrome, I have realised that nothing can stop me. I can achieve anything, even inspire others to do the same.