You Are Not Alone

An excerpt from Ian W McKinlay’s book “The KS Story” (You Are Not Alone) which is an excellent joint resource by Ian and Professor Milton Diamond of The University of Hawaii, professor Diamond has been a long time advocate of the Intersex community and has written extensively about 47XXY. Our excerpt concentrates on Ian’s personal account of what being XXY has meant to him,  it’s a journey of research and discovery that very much resonates with my own quest to know and do more, and in that process to compile all that’s learnt and give it back, or to hand it to a community that yearns for greater disclosure but, who lack the resources in order to achieve that. We have included this in “Our Journey’s” to make it easier for you (the XXY community)  to access, as well as keeping it alive which is so crucial amongst a jungle of multiple journals pertaining to “Klinefelter’s Syndrome” that all but ignore the XXY individual. This is for you!

1997 changed the way I viewed my life; past, present and future. It put a name to 45 years of fears and embarrassment, and to what I felt but could never tell anyone about. It was the year that I was diagnosed with Klinefelter’s Syndrome. The punchline was somewhat lost on me however, as at the time I was undergoing hospital in-patient tests to discover the cause of acute pain and weakness in the quadriceps of both my legs. And with still no light on the latter problems, I certainly wasn’t expecting to be diagnosed with another medical condition. Some weeks later on leaving my first visit to the endocrine out-patient clinic, having just discovered that a huge chunk of my life had been affected by this condition, I asked a junior doctor if there was any printed information on Klinefelter’s Syndrome. He handed me a small pamphlet titled: ‘Hypogonadism in Adult Men’, which to be honest confused me even more. I thought to myself, call me insensitive, but having just been told I had Klinefelter’s Syndrome there was only ONE pamphlet available, amongst the piles of literature on other endocrine conditions – and what the hell was hypogonadism? Being my usual non-confrontational self; I thanked the doctor and left.

It wasn’t until a few months later; when I began to look into the background to KS that I realised the true extent of what it really means to have Klinefelter’s Syndrome. Amongst the day-to-day business and social struggles and treatment for the crippling leg pain and allied stress,

it had not dawned on me at that point, that my search to piece together a clearer picture of my condition had, in fact, set me on an academic course unparalleled in my life, and one which would last well over eleven years! It also became clear as I progressed that Klinefelter’s Syndrome involved more than just endocrinology. There were many other fields involved, such as: clinical & surgical medicine, genetics, gender issues, rheumatology, orthopaedics and neurology.

You have to understand that much of my academic years were a disaster, so studying was going to create its own degree of challenge. But here I had a quest for information; something vitally important in my life, something that would help me understand my life and enable me to cope more fully with my symptoms. As usual, my spelling and grammar went out the window and my English and medical dictionaries became constant companions, but it’s truly amazing what you can achieve when you’re interested in the subject you are learning about.

Of course, while I progressed with my studies into KS the various medical specialists were beavering away trying to discover the original leg condition, with x-rays, electromyography, a nerve induction velocity test and muscle biopsy – joy! Unfortunately, for the first three years of my study into Klinefelter’s Syndrome, I had no access to the Internet. I would spend days in feverish letter writing, followed by weeks of non-activity, as I awaited replies. Then in 2001 I discovered that my local library offered Internet access, which transformed the way I studied, and the staff were so helpful.Believe me, the Internet makes a humongous difference to the speed and ease of collecting information.Eventually, in 2002 with family support I managed to purchase a secondhand computer upgrade — with a modem! I guess there will be many individuals that on leaving the endocrine clinic for the first time will be quite happy to leave it at that. Everyone is different – but some (like myself) will want to know more and that is the primary reason for this book. In my own case, I don’t agree with the adage that too much information turns you into some kind of hypochondriac. After so many years in the dark and a general nature for trying to understand how things work, I found that I was drawn to discover more. But again everyone is different. Everyone will have their own set of circumstances regarding the ‘telling’ of their physical and/or emotional differences to parents, spouse/partner or to their family doctor. And of course, if you have their support, study should be that much easier; as you won’t be resorting to covert tactics.

I plunged into my studies with the enquiring mind of a child learning about the world for the first time. After studying cells and chromosomes I found myself delving deeper; trying to understand DNA, then its components, gene replication, protein production, human reproduction, anatomy, orthopaedic surgical techniques. For weeks I was obsessed with the mindblowing design and beauty of the human body – an enthusiasm that exists to this day. Strangely, I can remember the ‘central subdivision of the bed nucleus of the stria terminalis’, but I keep forgetting to water my plants! It would be fair to say that my grammar and spelling are appaling and in any other written work it would be strongly suggested that I “don’t give up the day job.” However, Klinefelter’s Syndrome can affect academia big time, that’s my excuse and I’m sticking to it! Correcting my scribbles has probably only taken the edge off the worst of it.

Although I have been studying the many facets of Klinefelter’s Syndrome for the past 12 years and sound like an expert, I’m not. I have only scratched the surface. It is the research & support groups and medical publications with whom I have obtained study information who are the stars. Growing out of my own academic flaws and subsequent frustrations in trying to find and understand facts about my condition, my primary objective was to compile a book which would direct the reader to respected UK and international research, support and information resources.

Obviously, there are many thousands of websites, papers, journals etc., which I have not yet accessed, but what is important is that with this book you now have a reasonable contact database to commence your own studies. I have learnt a great deal from my own studies into Klinefelter’s Syndrome. It has put names to feelings and removed the fear of uncertainty. It has taught me the value of talking to and working with my GP and in the importance of seeking advice on endocrine and osteoporosis therapy. But above all, it has shown me that I didn’t have to suffer in silence; that there are others out there just like me, specialists who are ready to help and support. People who have KS, who know what I’m going through and lift my spirit with their honesty and compassion.

When no one knows
People see the ‘normal’ external persona of those with KS and particularly with regard to children, adults may think that their son is just hamming it. They don’t sense the physical and psychological maelstrom that some children might feel within.

Some people believe that because the national diagnosis figures are so low that it follows that the majority of males aren’t severe enough to warrant them seeking help. While there will be many who are not severe, from personal experience and from talking to individuals and support groups it is clear that from an early age many children with KS hide their physical differences and emotions.

With the hassle of everyday life and the trials and tribulations of all family members, without knowledge of KS, children may close off their feelings to those around them, usually because they think no one will believe them, they may be too embarrassed, or perhaps just don’t know how to express their feelings. And so throughout their life they live with their secret – or until they are eventually diagnosed.

Because I felt embarrassed about my chest proportions, since the age of about 10 or 11, I have always worn a top of some kind when in public—even on the beach. And no amount of comments such as “there are far worse bodies out there than yours”, would ever convince me to uncover. Stripping to the waist felt unnatural to me; more akin to a female going topless than a male. From experience, at 10 years old, the thought of surgery (whether or not it was viable), was extremely frightening so I never let on that I had hard lumps beneath my areola, even though they were painful if prodded. Quite often diagnoses of Klinefelter’s Syndrome is made in childhood or early teens as a result of discovering glandular tissue (gynecomastia). Puberty is a period of extreme physical and emotional change and stress for any child, whether or not they have KS. For some individuals with KS puberty can be a minefield of lies, embarrassment and loneliness. When lumps appear; whether gynaecomastia or fat deposits or a son’s body shape doesn’t match up to that of their peers, it is unlikely they will confide in their parents. However, if a parent is overly concerned about their child, there are non-confrontational ways to discover whether there is an underlying reason; by seeking their GP’s advice. It is important to look out for other traits; such as low self-esteem, passivity, inability to concentrate. You could also talk to other parents who have gone through the same thing.

When parents know
The latter family groups are of particular value when the situation arises where a son has been diagnosed in childhood, and it comes to the inevitable point when the parents have to decide how, or if, they should tell their child the truth.

When the truth is withheld, the child may think that their parents are hiding something from them, though sometimes holding back to a later age is more preferable; for instance, if the child is immature. Some clinicians believe that when a boy is about 10 or 11 years old, parents should inform them that they have body cells which are slightly different from other people, and that is why they are attending hospital clinics. Then around 12-18, more detailed information can be given; including the fact they might be sterile.

That said, parents know their child and at what age they can be told certain aspects of the condition. So it is vitally important that their child’s emotional maturity is evaluated before embarking on heavy-duty details. The scenario is that at 12 years old it could be so easy for him to casually pass on his ‘secret’ to a pal, only for them to thoughtlessly pass it on to someone else, mistaking ‘infertility’ for a ‘sexual disorder’, leading ultimately to possible bullying tactics. So you can see the value of talking to other families and to professionals who can give you help and support.

Possible gender issues
I would like to say at this point that everyone is different and I talk from my own experience and stress that currently, medical research sees no direct link between KS and gender dysphoria, though throughout XXY/KS support groups there are a good many people who exhibit gender differences.

Even having been diagnosed with Klinefelter’s Syndrome, there can still be other issues and powerful emotions which some will find hard to express – to anyone. I am blessed with a loving and supportive family, yet through puberty and into adulthood, with no idea of KS, I was unable to open my feelings to them. I had physical differences, but I had something else – something so sensitive I said nothing to anyone until I was in my early fifties.

Since around puberty, I have felt partially feminine. It’s hard to express the amount, but I guess it’s around 15%. I have had no interest in changing sex or gender role; that is there has never been any confusion over being anything other than a man/male and heterosexual. After 35 years of silence, I really needed to know about my gender issues, but I was embarrassed, unable to talk to anyone and no idea who to contact for information. Thinking that one of the endocrine doctors would know, I plucked up the courage. Although he made a gallant effort to answer my questions it was an utter disaster, for he knew nothing of this subject and of course it resulted in tangible embarrassment for both of us and inner anger towards myself for having put both of us through that cringing ordeal.

When I eventually contacted one of the gender support groups I was staggered by their vast experience and understanding of emotions such as mine. I can’t express in words how I felt that day,

listening to the confidential contact on the phone. Having studied KS for so long I became confident enough to eventually talk to my GP and it was fine, not the big deal I thought it was going to be. And he was so supportive and understanding I wished I had talked to him sooner. I have recently discovered that I am ‘Androgyne.’ This is different from being a Transsexual or Transgendered person.

You are not alone!
From talking to various support groups the most widely felt emotion expressed by those with Klinefelter’s Syndrome is the feeling of being alone. Often not aware of what is happening to them, they withdraw into themselves; unable to talk to family members, spouse/partner or to their GP. And of course, nobody around them knows what they are going through, making assumptions – such as that they are gay; because they are not interested in girls/women, or a wimp because they won’t participate in physical education or rough competitive contact sports. Though in general children with KS are passive, there can be mood swings. This is particularly true of adults, with disruptive outbursts, usually due to frustration. Throughout my life, I have been a pussycat— to a point. Then, through building frustration I would suddenly snap, totally losing the plot. Thankfully, it has mostly been inanimate objects that have received my unswerving attention. Over the years I have learnt to reduce the ferocity of the outbursts; otherwise, I would tend to destroy whatever fiddly thing I was trying to create or mend. Back in 1997, eager to commence my studies into Klinefelter’s Syndrome, it seemed then that it was a straight forward and relatively easy to reach goal. How wrong I was! It would have been a waste to just file away all the knowledge I have collated and learned over the past eleven years, and so I offer it to you, in the hope that it helps you or someone close to you to understand more fully the complex nature of Klinefelter’s Syndrome. As I have said, I may not be the world’s greatest writer, but the work is – to the best of my ability, honest.So please trust me. There is someone out there right now, waiting to hear from you,someone with experience of Klinefelter’s Syndrome – and the many other facets that accompany this condition, who is ready to listen, to offer advice, and to ease your mind. And if you’re too embarrassed at this stage to talk to someone, go to one of the support group websites. Whatever you decide to do please remember, You Are Not Alone!

The KS Story (You Are Not Alone)