Written By: Chelsea Castonguay
J is a man in his late seventies years who resides in the UK. As an older gentleman with Klinefelter Syndrome, J says “since I’ve begun to understand KS, I’ve wanted to increase awareness.” For J, that means being open about his diagnosis, what it’s like to have been diagnosed in his late thirties, and not have started treatment until well in his sixties. To respect J’s privacy, he will be referred to only by an initial.
Childhood: “I’ve always been a bit of a dreamer, I suppose.”
J was the middle child, born between two older brothers, and two younger sisters. His family was large, but this didn’t shield J from the scrutiny of his parents and siblings. Both his parents were also from the United Kingdom.
His parents had high expectations for their children, which J’s siblings were able to meet. However, this didn’t happen as easily for J. He was a sickly child, prone to asthma, and bedwetting. He also suffered from a circulation issue that caused his hands to turn white in the cold, along with a persistent stutter. His family struggled to understand why J didn’t pick up on things as fast as the other children did, which resulted in him casted in the role of “the family idiot.” He described a childhood where he was “put down at home”, and added that makes it “very difficult to raise your self esteem when you’re constantly put down.” J was an emotional child, and cried frequently, much to his father’s annoyance. When things became too much to bear, J hitchhiked and ran away from home. He would frequently find himself a hundred miles or more from home, and think “oh, I should go home then.”
School years: “This question is so easy…I totally misunderstood all of them.”
As a child J “absolutely hated school; hated every minute. Couldn’t get out quickly enough.” He found school “very, very difficult.” J went to a strict religious school, where stepping out of line earned a caning from his form teacher. J said he socialized with the “lower echelons” of school society, and was frequently “a bit naughty.”
After taking his exams at the age of 11, J was shifted to secondary modern school, “where the failures went.” During these years, a special class was created for children like J who’d been born during the 1940s, and weren’t achieving the same academic success as their peers. J joked these students were called “bean stalkers,” as they were all quite tall. However, J enjoyed some of his classes, particularly English, geography, history, and science. Mathematics and practical skills proved more difficult, at which he was “totally useless, and demonstrates by gesturing that it went over his head. J left school at 15, and entered the workforce.
After leaving school, J began working in a large UK city. Always a hard worker, J enthusiastically joined the workforce, holding down a series of odd jobs. He “flitted around for about twenty or twenty-five years doing any sort of job.” However, despite his willingness to work, J often found himself at the wrong end of a “few mishaps there, anything that went wrong seemed to be at my hands.”
Over the years, J held a series of jobs. However, he said of these jobs that “none of them really suit[ed] me, until I became a ….salesman at age of 37. Selling really suited me.”
When talking about his years as a salesman, John comes alive. He’s animated, and excited to talk about the career he clearly loved. He spent 25 years in sales, and said “selling… is tremendous fun; it’s so easy. It’s big money; it’s really easy.” Sales allowed J “to step out of [his] shy, reserved personality and become someone else.” Instead of feeling awkward or out of place, J felt a sense of purpose and belonging when working in sales. “People used to listen to me, and they’d respect what I was saying, and they’d buy from me. It was a tremendous ego boost; nothing like it.”
J’s diagnosis came about by “pure chance.” In his early twenties, his father passed away unexpectedly. Despite never really getting along with his father, his death was a “tremendous shock”, and it took J several years to come to terms with the loss. J said he had a “breakdown” at age 27, which resulted in him arranging a visit with his General Practitioner, or GP.
Growing up, J had a sneaking suspicion something wasn’t quite right with how he moved through the world, but he struggled to understand what that was. He “couldn’t relate to people,” and as a result kept himself quite distanced from everyone. Even his coworkers knew very little about him, as J focused instead on discussing clients and sales techniques, rather than sharing personal anecdotes about his life. He struggled with the administrative duties of his sales job, often earning him reprimands from supervisors. J felt he “didn’t understand the world, and my place in it,” which led him to a spiral of depression. He didn’t know at the time depression can be a symptom of lower testosterone levels.
Around this time, J was spending time with a couple of friends. One of the friends encouraged J to get a sperm count completed, and John thought “sperm count, that’s an idea, I could try that.” He visited an agency that offered a variety of services to young people, joking as he relates the story that “I was young in those days.” J went to the agency on a Saturday, explained the issue, and was told he needed to meet with an endocrinology specialist.
J was referred to a local hospital. He found the hospital deserted on that Saturday afternoon when he walked through the dark, deserted corridors. J was directed to the second floor, where he knocked on the door, and asked for a sperm count. He spoke with a “chap who was a bit amused,” by the whole scenario, and was told to produce a sample. The clinician examined the sample, then said “Well, if you promise not to go jump off the London Bridge, I’ve got some news for you. You’ve got a rare condition called Klinefelter Syndrome. You’re almost certainly sterile, and you need to speak to your general practitioner.”
The clinician wrote the information about Klinefelter Syndrome out on a piece of paper for him, which John still has. He went to see his GP, and she said “How…did you arrange all of this?” She was furious J hadn’t gone through her first. After telling him to return for another visit a few weeks later, his GP informed him there was “no treatment, there’s no cure, you’ll just have to get on with life.”
At this point in the interview, there’s a long pause while J looks off in the distance, as if recalling the exact conversation between himself and his physician that took place almost half a century ago. After a moment he said “So I did.”
Once he received the diagnosis, the first thing John did was inform his family. He said they were “nonplussed,” and “didn’t say anything.” Since J didn’t know what to say either, there was never any discussion about what Klinefelter Syndrome was, or how they could support him. To this day, they haven’t done any research on the topic. Regarding his family, J said “They think they understand me, but they don’t.”
Getting on with life:
Not long after receiving his diagnosis, J joined a marriage bureau with the intention of finding a wife. After almost a year, he nearly gave up before meeting the woman who would become his wife. She came with a three-year-old daughter. They had “12 pretty good years together,” and of being married J said he “absolutely loved it… enjoyed the sharing.” With a laugh, he added that “like most men I hated shopping, absolutely hated being dragged about the shops. When I did have to go to the shops I was told never to pick anything up from the shelves, just push the trolly.” J enjoyed the other social aspects of being married, and joined a social organization which helped him make friends. However, he was still “very shy back then, always been shy, and drank a lot to take away the nerves.”
Unfortunately, the marriage eventually broke up, leaving J alone. He said it took about six months after the divorce for the magnitude of the situation to really sink in, and many years more for him to “come to terms with it.” This was partly because being a married man gave him social standing. J related that in the UK, single men aren’t afforded the same access to various levels of society as married men are. Additionally, being married gave J something to talk about with others. The problem of relating to people he experienced wasn’t so bad, because he was married. He said, “marriage gives you a certain acceptance because you’re conforming to society’s morals.”
J credits his marriage with giving him the courage to embark on the sales career he’d long coveted. He was good at selling, but on retrospection thinks part of that success was because he didn’t naturally pick up on his customer’s nuances or body language. For example, J might miss cues that they didn’t really want to commit, and would push on, earning the sale. J’s skills were often complimented by his coworkers, who called him a “salesman’s salesman.”
After his divorce in the early 2000s, J found himself with a lot of time on his hands. He felt as though “everything seemed to go into reverse, everything I’d gained gradually fell away.” He filled those empty hours with alcohol, and time spent on the internet. While scrolling through pages on a medical site, J stumbled across a treatment for Klinefelter Syndrome he’d previously had no idea existed. He finally learned the reason for the depression or chemical imbalance he experienced throughout his life, and the struggles he experienced socially actually did have a cause, which was due to his body not naturally producing testosterone. He began testosterone replacement therapy at age 64.
J found himself going through puberty, decades after his peers. He developed acne, his chest broadened, and his voice became deeper. J became more assertive, and at times was even accused of being aggressive. However, he found his thinking had become clearer, and he was better able to use logic to reason through problems. His writing became clearer, with the sentences becoming shorter and more concise. His grammar also improved, which he noted as creating a “tremendous difference.”
After learning about the testosterone treatment, J delved more deeply into various scientific medical papers. He discovered an Italian research paper that referred to Klinefelter Syndrome as “the forgotten syndrome,” which he feels is an apt description. In his experience, J feels “most doctors don’t really know what Klinefelter Syndrome is. It goes over their heads most of the time; there’s not a directive from the NIHS to look for patients with chromosomal issues.” While there had been a directive for more research made in 2015, the departure of England from the European Union ended any further studies. This has left many men in the UK in the lurch when it comes to finding support for their Klinefelter Syndrome.
Part of the issue lies with healthcare providers, according to J. He feels “doctors understand the nuts and bolts of what happens at conception, but they don’t understand, or they don’t listen to their patients. They don’t engage enough with their patients to understand the problems that we experience in life.” He found a lot of the early medical papers were “academics looking down on people with KS, as inferiors rather than engaging with them. If they’d have engaged with them on a one to one level, they would’ve learned so much more.”
Despite being armed with this knowledge, it took five years for J to convince his doctor to send him to an endocrinologist. He was repeatedly assured his doctor was “making some inquiries,” but soon came to find out this was because his doctor had no idea who to refer him to. Eventually, J was referred to a urologist, who immediately offered a testosterone pellet insertion in his backside. The pellet lasted three weeks before falling out, leaving J once again without testosterone.
From there, J began using testosterone gel, which he still uses today. While he still uses it, he has cut back on the frequency in the last few years. J feels that at his age, “testosterone served a purpose, as much as it “ignited the embers and got my body working.” J spoke about the importance of testosterone for men, comparing it to the oil needed to keep a car running, and says “the whole body benefits from testosterone.”
A couple of years after starting his gel treatment, J experienced some difficulties with his dosing. Even though he was following the doctor’s recommendations, he found himself with unusually high levels of testosterone in his system. When his doctors discovered this, they removed him from his treatment, cutting him off cold-turkey and accused J of overdosing. The sudden drop in testosterone sent J into a chemical imbalance while his body grappled with his rapidly dropping levels. Regarding that experience, J said “in a way they were in a position of authority, so that gave them carte blanche to make statements like that, to impose those rules.” J continued to insist overdoing was the last thing in the world he’d do, and eventually was given access to testosterone again.
Living with Klinefelter Syndrome: “I’m a dreamer, always have been; it’s a good thing. It keeps you young.”
Over the years, J has had time to think about what it’s like to live with Klinefelter Syndrome, as well as how it’s impacted him throughout his life. For him, communication has always proved difficult, even from his youth and beyond. J says, “the problem is I can’t express to somebody else how I’m feeling and what they’re saying to me I can’t always understand. I think that’s very important because it manifests itself as a communication issue. Life is about communication and I have difficulty communicating.”
J retired from work at age 63, and he “highly recommends it.” Being retired has given J the opportunity to slow down, and to start new hobbies. Since the COVID-19 pandemic, J has a newfound interest in reading, and enjoys taking his time with books, saying “when I’ve fought my way through the normal chaos of life, I like to read”. He also enjoys shopping for birthday presents for family, and has a special knack for finding just the right gift. Although his shyness prevents him from attending a lot of social events, J enjoys a weekly support group meeting with other Klinefelter men in the XXY community.
Even though he’s in his seventies, J says he’s “never really grown up,” which creates for him a natural connection with children. Even though he’s experienced some hardships in life, J says he still “likes people,” and “isn’t a bitter person.” He says one thing people must learn is to never hate others, as hatred is self-destructive. John also encourages others to “remain as positive as you can, and take things one step at a time. Just keep working at it.”