Lost and Found

It’s not unusual for those who are XXY to publicly state post diagnoses, treatment and getting their lives in order, they are going to write a book documenting the experience, what is unusual is for someone to actually complete one,  and then to go one step further and have it published. Stephen Malherbe of  Cape Town South Africa is one such person, he published “Living With my X” in 2012 and since that time both he and his partner have been busy raising much-needed awareness in their part of the world. If you live in South Africa and would like more information about XXY/Klinefelter’s Syndrome, then we would encourage you to make contact with XXY47 South Africa

 

l grew up in a family on the wrong side of the tracks, we never had much to spare. I was the youngest of three. My brother 5 years older and my sister 18 months older. Life was hard, my father was in a lot of ways like a fourth child, my mother was tough and long-suffering. My father had become mentally ill and suffered from multiple personality disorder. My mother worked two jobs just to keep the wolves from the door and we saw little of her from day to day. My father was in and out of hospitals (mental institutions) and in and out of work. I was always a sickly child and therefore demanding of attention. My mother in the little time she had spent much time on a diagnostic odyssey with me and my ailments.

Like any boy, my older brother was a hero to me when I was little. I wanted to be like him, but while he was really good at sport, I was useless and could not kick a ball straight. I understand now why he did not want me around. He saw me as the annoying little brother who was just a shy gawky kid. School life was awful and I hated it. My school years were the worst time of my life. I just didn’t get it. This was made worse by the fact that I was very short-sighted and could not see the blackboard. This disability was only discovered when I failed in grade 2. I struggled with the mainstream school system. In those days there was no special needs class and anyway, my mother could not have paid for remedial teaching. I began to think I was just stupid, not helped by the fact that teachers and classmates reinforced this idea.

I failed grade 4 the year that I accidentally amputated my pinky finger on my left hand. I was off school for three months. I did not miss being there though as I was away from all the bullying and ridicule. I did, however, have a few good friends but when they all started puberty I noticed that I was left behind. Their voices began to break and they all grew hair in the right places. My body still looked like I was only 10. When comparing penis size, (as boys do) I was left embarrassed. I believed and was told by the doctors that we constantly visited that I would eventually catch up. My friends all seemed so cool but I was left out.

My mother who was a qualified nurse knew that there was something amiss. She compared me with my brother. I read the diary she left and she wrote about how I was pretty and sweet and should have been a girl. Eventually, she found a doctor who suspected that I needed to see an endocrinologist and at last, I was diagnosed with Klinefelter’s Syndrome.stephen

After this, things fell into place, this diagnosis explained so many of the issues I had struggled with for so many years and why my body had not developed. I began a course of testosterone supplementation which was administered for one year only. The treatment was stopped when I reached 6 feet tall. This was when I was 17. While I was on the testosterone my self- esteem improved I looked more like a man and I felt great, however, I often felt emotional and oddly enough I felt broody, I longed for a daughter.

People at the time threw out the possibility that I was possibly depressed. Odd how people make comments like this when they have no idea what is happening. At this time I also left school after completing grade 10. I had been on testosterone for about 6
months when I was drafted into the air force. Conscription for boys directly after school was compulsory in those days, South Africa was officially at war. Boys I knew went off to the army and fought on the border, they often did not return, of those who did many came back with messed up heads. Every night on TV we would hear the news of how many had died and how much danger we were all in from the communists. (This is the line we were constantly fed) I was thankfully exempted from military service. I will never know if it was because I was so small, or because of my eyesight, or the fact I had Klinefelter’s syndrome.

When I came home I had to do something so I began an apprenticeship in printing.
At about age 25 I got married to a girl who I had been dating for a while. I probably should not have, but my peers were all doing it. At this time I was given the devastating news that I was sterile. This was one of the reasons the marriage did not last. When I got married I was doing karate. I did quite well, eventually getting a black belt. However, I was constantly breaking bones. I just put it down to shit luck. There were certain exercises that I struggled with especially anything which needed lifting my own body weight. My muscles always hurt, my bones hurt, I just hurt all over all the time. Only when I was 37 was I told I had osteoporosis and that I should have been on testosterone my entire adult life.

Time passed after my divorce and I started dating again. I adore women and I love their company. However, I was always troubled by the fact that if I met a special woman I would have to tell her I was unable to father children. So many times a relationship would develop but would falter when I disclosed my sterility. Stock answers would be things like “maybe we should just slow down a bit” or other kind put-downs. I decided perhaps I should look for an older woman who already had children. Other issues that I have had, I only lost my baby teeth at 49 years old, I have had many embolisms post surgeries, I have had chronic stomach troubles, I get tired very easily and those are just some of the physical things. I have had many relationships, some of which ended because of complications with my KS personality.