Hello, I’m Brian. I’m 36 years old, and I have Klinefelter Syndrome. I’ve been following Living With XXY for about a year now. Since finding this organization, I’ve finally started to understand what Klinefelter Syndrome is and how it has shaped the person I am today. I recently talked with Ryan about what Living With XXY means and how I’d like to do more for the community. He asked me to write a series of blog entries that discuss and examine my life, thoughts, and experiences living with XXY.
Before we go any further, I want to say that I wholeheartedly support and stand behind the mission of Living With XXY. It’s essential to me to give hope to the community. That said, I’m also not someone who shies away from talking about the troubling things I’ve experienced. I hope to give others in our community validation for their experiences, regardless of whether they’re positive or negative. I think it’s lovely that we highlight the positive traits of Klinefelter Syndrome.
But I also believe we owe it to ourselves and our community to share our struggles. All experiences shape who we are. And, if we don’t put some focus on the negatives, we can’t show how genuinely tenacious we are. We might struggle in some areas more than others, but we adapt, overcome, and thrive. I’ve been as open as possible about my life for a few years. It took a long time to get to a place of acceptance with XXY and my other mental illnesses. In the face of it all, though, I’m proud of who I am.
Let’s talk a bit about mental illness. Just as XXY is part of what makes me, me, so are my other diagnoses. I’ve been diagnosed with Complex Post Traumatic Stress Disorder, Intermittent Explosive Disorder, Obsessive Compulsive Disorder, Major Depression Disorder, Binge Eating Disorder, and Attention Deficit Disorder. I’ll probably talk about most, if not all, of these in later entries.
Mental health advocacy and supporting others with mental illnesses is critical to me, and I frequently struggle to write ANYTHING without bringing it up in some capacity or another. Some of what I say may be hard to read. But I think it’s vital that we not dwell on what’s happened but instead invest our focus and energy on learning from it and looking towards where we can go. I cannot change the fact that I have these illnesses, nor the circumstances that brought them into my life. So, rather than bury them and hide those parts of me, I stand before them and do not allow them to define me.
Time for a little mental exercise! Picture a jigsaw puzzle. Now, turn all of those pieces upside down. Ok, now try to put the puzzle together! Doing so would be somewhat challenging, wouldn’t it? For 32 years, I tried to solve the mystery of “Who is Brian?” with all the pieces turned upside down. I knew the pieces had the potential to be “made whole.” I didn’t have all the information to see how they connected. It was just a handful of pieces with no big picture.
Some details were turned over when I was diagnosed, allowing me to see part of the “big picture.” As I’ve learned more about Klinefelter Syndrome, more and more of the pieces have turned over. Knowing I am different from most others for many years has been very unnerving. And yet, I had no big picture (no diagnosis) to pinpoint what made me feel that way. I tend to label myself; many people have pointed this out throughout my life.
I think labeling myself became a coping mechanism after so many years of being unable to fully explain aspects of my life. I’ve been envious of the boys and men diagnosed in utero for some time. Putting their puzzles together might still be challenging, but they’ll never have to try solving it with all the pieces turned upside down. They’ll never know what it’s like to feel different without the ability to explain why that is.
I’m excited to write about what living with Klinefelter Syndrome means. It’s a firm belief of mine that we can all benefit from sharing our experiences. I know some of what I’ve experienced so far is not unique. I hope my thoughts and perspectives might bring clarity and/or validity to those reading this. I’ve asked Ryan to link my Facebook account to this post for anyone interested in chatting with me. I am open to talking about pretty much anything. If you have any questions or want to make a new connection, please don’t hesitate to contact me. I encourage everyone to share your perspectives. The only way we’re truly alone is if we choose to shut everyone else out.