If you are a Psychologist or Psychiatrist and meeting with me for the first time, try to understand the correlation between my low self-esteem and depression. Before seeing you I have already been seen by several doctors who have informed me that XXY’s are abnormal or an anomaly that my quality of life will be meaningless unless I subject ourselves to lifelong exogenous testosterone. As a Psych, you should realise how such a demeanour of my existence could well and truly knock the wind out of my sails and that I am now struggling to understand who and what I am. Please work with me to be that voice of reason and to reassure me it was okay to be my own interpretation of myself, work with me to unravel the harm already caused.
I need you to tell me about support groups and conferences for XXY people, or if not that, then something similar where my difference is not only accepted but encouraged. Don’t make me feel like a freak or an anomaly. Endeavour to understand the in-between nature of XXY and help me to fit in with society without losing my unique perspective and sense of self.
This in-between existence is inexpressible to a non-XXY person yet it colours everything about my perceptions and feelings. Understand you cannot medicate or talk this state away without doing harm to my most intimate sense of self. It is an essential part of what makes me the unique person I am. Teach me how to communicate my needs to my treatment team so that they can be met appropriately in accordance with my desires.
If you are a Parent please remember that I am not you. Allow me to make my own choices and explore my being. Don’t ask me if I feel like a boy or a girl. Chances are I cannot explain my feelings to you in a way you can understand. I need you to make decisions on my health care when I am too young to make them based on good information and not out of a desire to shield me from something you may perceive as uncomfortable.
I need you to be honest with me about my health. Allow me to see my doctors on my own. While I am young, I need you to keep my health and school records organised in some sort of system. When I become a teen, teach me how to keep my own health records. It is imperative to me that you be my number one advocate and speak for me when I am a child and unable to communicate my needs and wishes. As I grow, teach me to advocate for my own health and welfare.
Respect my privacy whether I am 1 or 11 or 21. Don’t use me as a poster child for XXY to your friends or to the XXY community at large. These are sensitive issues, my health and welfare are confidential information. One day I will become an adult and it will be my decision about how much of my privacy I give up to talk about XXY issues. When you are talking about me on support forums, remember nothing on the internet ever truly goes away.
I need you to love and accept me unconditionally for who I am. Take the time to listen to me and to get to know me. I am the one to speak to about my private information. Doing so lets me know there is no shame in being me. Allow me to explore my artistic and creative self through art, dance, language, music, carpentry, etc.
If you Are an XXY Individual it’s important to realise we are unique insofar as what works for one individual may not work for another, to that end, we all should be free to acquire a plan that best suits our physical health, as well as our sex and gender identity. Your doctor should test your natural estradiol, non-medicated testosterone, luteinizing hormone, and follicle stimulating hormone levels. You need to be entirely confident and accepting of your gender identity, which may be Female, Male, Non Binary, Queer etc. To date, most of the medical profession considers all XXY individuals as male. Consequently, for XXY males, accessing suitable testosterone is quite easy. Even so, each individual produces their own natural levels of testosterone and, as such, the plan needs to cater to their needs rather than a ‘one-dose-fits-all’ approach. Too much testosterone may cause physical and/or psychological side effects, too little will not achieve the desired outcomes. It is also significant to mention that the replacement forms of testosterone are not bio-identical to the testosterone produced naturally. It is suggested that you speak to your treating medical professional and ask them to ensure that you receive the dose suitable for you as an individual.
This is one reason why yearly physicals are recommended so that your doctor can monitor your health. Too much testosterone can thicken your blood (increase hematocrit levels, which is red blood cell levels). In extreme cases, this is called Polycythemia. For older XXYs, another danger of too much testosterone is enlarging the prostate (BPH – benign prostate hyperplasia). This is not cancer. Over a certain age (45-50) you should get yearly prostate digital exams.
For XXY females, estrogen supplementation may be required to achieve and maintain their health. However, for XXY individuals who are visibly male, yet who identify as female, or choose to be androgynous, or identify somewhere on the spectrum between the binary of male and female, suitable hormone intervention, which caters for these people’s specific needs, may be rather more challenging to access. Additionally, as with testosterone, you would be well advised to thoroughly research the possible side effects of any hormonal intervention.
Most of the medical profession is of the opinion that just because you are XXY that this automatically means a diagnosis of Klinefelter syndrome, which therefore requires testosterone. Sometimes it may be easier to reply “yes,” to these assumptions because you are tired of having to educate them that alternative views and treatments exist. You may fear they will consider you as promoting some type of new-age or unscientific “activism,” and therefore react against you, by either dismissing your suggestions or trying to persuade you that the standard is the only viable option. To support your position, it is recommended you provide them with a copy of the NIH Genetic And Rare Disease information, which explains the distinctions between Klinefelter and XXY and has information on gender identity variance.
No matter how you try to explain that you are comfortable identifying as neither male nor female (or somewhere on the sex/gender spectrum), most members of the medical profession do not understand these distinctions. Accustomed to binary-based thinking, most medical professionals can comprehend the Transgender experience, in which the individual seeks to transition from one side of the binary divide to the other. However, these same professionals often find it difficult to grasp the notion that some XXY individuals, while not identifying as male, do not automatically wish to transition to that of the female sex or gender identity. Yet many XXYs, do live happy and rewarding lives in the middle of the sex and gender spectrum, which exists between the binary extremes of male and female. Such XXY people do not seek estrogen to address an assumed (on the part of doctors) gender “problem,” but rather require the estrogen to address physical health issues.
Understanding your own needs is necessary when explaining these issues to your treating medical professionals. Some XXY and/or intersex people need hormone intervention, not necessarily to address gender identity issues, but rather to assist the body to maintain a healthy balance. Gender may be a factor, but it is not the sole reason non-male identifying XXY individuals seek medical assistance. Sex and/or gender variant XXY people are usually not gendered confused. Often intersex people become frustrated because the English language does not have the words to describe the non-binary or sex/gender spectrum experience. Rather, binary language dictates how society and especially the medical profession treat intersex people, which often results in the refusal to acknowledge that a valid and rewarding life is possible between the binary extremes. The medical profession often considers in order to live a valid and happy life, testosterone is the only therapy option for a person diagnosed with Klinefelter Syndrome.
Unfortunately, medical science is slow to differentiate the chromosome combination of XXY from the male endocrine condition commonly known as Klinefelter Syndrome. Yet not all people who present with the physical characteristics associated with Klinefelter Syndrome have an additional X chromosome. Even so, currently, as if by default, everyone who presents with an XXY karyotype is automatically diagnosed with Klinefelter Syndrome. This automatic diagnosis is made even though many individuals do not possess the physical characteristics of the condition, nor do they report issues with their masculinity.