The following is a bit of my story…
“We all have a story to tell, and a perspective from which our experiences determine who we are”. Kelsey Maffei
Starting from my childhood, I attended a small private school (about 200 kids) and the expectations in this school were higher than most. I got mostly good grades and excelled in spelling and writing. I did well in math, until about Algebra II, as I had trouble with the conceptual theories and the addition of letters in math (what is the purpose of that anyway?). I graduated high school with a 3.14 GPA and went on to college. I went on to graduate from college with a bachelor’s in psychology and a minor in business administration. In a human sexuality course in college, I learned about sex chromosome variations and briefly about Klinefelter Syndrome. I suspected similarities in myself, but brushed it off and thought that was something that only happens to other people.
Socially, as a child and into my adult years, I have always struggled with self-confidence and interacting with groups of people. I do pretty well with one or two people in conversation, but more than that I have anxiety and resort to being the observer rather than interacting. At 40 years old, at the time of this writing, I am becoming more comfortable with the idea of that observer role as opposed to thinking I need to be more extroverted, but for many years I used alcohol to try and be what I thought I wanted to be social. Needless to say, that never really helped me achieve the goal of being more comfortable in groups.
Path of Optimism
As a new day dawns fresh air abounds
Taking a deep breath I stroll the grounds
With no one around I relish the tranquility
Of the freedom the silence and the security
My buddies join me to keep me company
As I contemplate the future of our family
Not a traditional composition to be
Rather a mixture of hope and complexity
Such is life as I have only to accept
Knowing that I’m given the strength to adapt
And handle all that comes my way at one time
– Kelsey Maffei 2008
My wife, Tanya, and I met our senior year of high school and we have been together ever since. We got married at 23 and started trying to have children a couple of years later. After a year of no luck, we decided to seek a medical explanation and I had a test at the local hospital to see what my sperm count was. It came back with zero and was confirmed with a 2nd test of the same. That led to seeing the urologist, who did a karyotype and confirmed the non-mosaic, 47 xxy diagnosis. I was 27 at the time, and I was devastated. I couldn’t even look myself in the mirror for months. I resorted to drinking and sank deep within myself for several years. I finally quit drinking altogether almost 5 years ago. Now I use exercise and running to manage my anxiety and emotions in a healthier way.
Tanya and I realized our priority was to have a family and we weighed our options. We chose to use donor sperm and IUI, and we were lucky to have 2 beautiful and amazing children with this process. It was challenging for me to accept the use of donor sperm, as “I felt like I was choosing my own replacement. And I was worried that I would not have a loving connection with my kids, but that worry evaporated as soon as I held my kids for the first time; I have not worried about it since.” Kelsey Maffei, I will always be their father, whether I contributed to their existence biologically or not.
I did not begin TRT until about 4 years ago. When I was diagnosed, my T level was at the bottom end of the normal range (about 220), and the doctor didn’t think it was necessary. It wasn’t until about the winter of 2015 that I started to feel most of the classic symptoms of low T. I then asked my doctor for a test and it was less than 100, so I started weekly self-injections of testosterone. Life has been much different for me since then. While I understand that TRT is not for everyone, I feel like it has been a positive influence in the stability of my moods, my ability to have any muscle mass, to manage weight gain, and to now be able to grow a beard. I see that my self-confidence has improved, and I am better able to focus on things I decide to pursue.
For the first 10 years after diagnosis, I kept it a secret, except with immediate family and a few close friends. That was challenging on many levels as I felt I was living a double life, hoping with all my will that the 2 would not collide and people would not see who I really was. Thankfully, for the past 3 years, I’ve grown to the level of acceptance which allows me to be open with the world about who I really am, diagnosis, and all. “I feel like by sharing my story of living with XXY, I have the ability to shape people’s perceptions of who I am before they have a chance to determine their own conclusions based on what they read online about Klinefelter syndrome.” Kelsey Maffei
Overall, we live a comfortable life, that is not without its’ challenges, but we try to focus on the positives and not let the diagnosis dictate how we should live our life.
-Kelsey Maffei 2015
Thank you for sharing part of your story. When you mention the double life part my heart started beating faster. This has been me my entire life! I will gain the courage from your story to open up about my diagnosis and life beyond. Thank you for sharing!
Thanks for sharing that, Eric. I always hope that the way I have felt on my journey will resonate with someone else. Part of what drives me to share my story is that I want people to see they don’t have to feel like the way they have always lived their life (double life, or behind a mask) is the only way. There is always another step, and through sharing our experiences people will begin to see other paths. I wish you the best on your journey.
Great story and post Kelsey! Thanks to you and Ryan for increasing the knowledge of XXY individuals. While each person with XXY or Klinefelters has a unique story there are definitely some similarities and it is both positive and reaffirming to hear.
Thanks for your comment. You are so right, that we all have our own unique stories. Yet, at the same time, it’s easy to identify with similar thoughts and feelings throughout. We are definitely not alone.
Wow! Your second poem hit me SO hard……such similarities to what I feel, and experience, and hide, and pretend…….I have been so damn alone in dealing with this……doctors have zero understanding about what their pharmacological fixes do to the person inside…….I was diagnosed during puberty, in an all boys Uber conservative boarding school, when my breasts began to develop…….hell on earth. After (3) excruciating years, including the wild two week testosterone rollercoaster, and endless peer tour tire, I told my parents I was not going back, and would run, if they forced returning. That summer, I had a bilateral mastedectomy. The next school was an improvement, and my grades went from straight D’s to straight A’s, and I was able to move forward to college, but I never felt I fit in, nearly entirely due to what I now know are the common effects of KS on the mail body and mind.
I compensated for the lack of T, by immersing myself in authoritarian pursuits…….body guard, police work, EMT, Fire Police, Security Systems Specialist.
Like you, though much later, I got married, could not have kids, which I had known about since my late 20’s, went through the “not a read dad” mind screw, got a donor (that gave an entirely new meaning to online shopping), (3) failed IUI’s, and finally success through IVF, in the middle of a Series of blizzards, no less. And like you, as soon as I held her, I was Dad. BUT, the T-driven rages have always been a part of my life, to this day…….
I quit taking the T, during my wife’s pregnancy, because I was terrified that I might blow up and her, or, Far Worse, the new baby,……so I quit taking it…….for several years……and my body began to fall apart……I broke bones, many times…..my self esteem evaporated…….and here we are, now nearly 9 years later, still not consistently taking T……every time I try to start taking it, I turn into a monster…….I coped with that for years by turning to a bottle, or pain killers……and then I’d stop taking it again.
Now, I am 57……..and forced to use a power wheelchair, due to bilateral Charcot Foot, yet another of those fabulous side effects of diabetic neuropathy…….that and the super weak bones……..and inability to maintain muscle mass…….and emotional rollercoasters……..and now we have Covid……not me, personally, yet, but many around me, and my wife treats Covid patients, daily, and I have not left the house, for anything other than monthly MD appts, since late February…….and depression is here, hardcore. I tried to go back on the T, last week, on a minimal, super low dose, and yesterday and today, the anger came back…….BOOM.
I never knew this board existed….til finding it, this evening…….HOPE.
Wow, Tad… thanks for sharing your story. My apologies for just now seeing the comments on this page. It sounds like you have been through a lot on your journey. And I want you to know that you are very much not alone. With the amount of trauma we all have experienced, to some degree, I just have to keep reminding myself that we are all far more capable that we will every allow ourselves to believe.
Hey Kelsey, thanks for sharing your story! I had planned on writing a long comment here with multiple questions but I’ll probably just reach out on Instagram or something. Thanks so much!!