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 adhere to lifelong exogenous testosterone. As a Psych, you should realise how such a demeanour of my existence could knock the wind out of my sails and leave me to question who I am. Please work with me to be a voice of reason and to offer the reassurance it’s okay to be me, help me to unravel the harm already caused.
I need you to tell me about support networks for XXY people, or if not that, something similar where my differences are not only accepted but also 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.
XXY’s who were raised male but who identify their gender as something else usually seek out alternative sex defining hormones to testosterone but find conventional medical practices reluctant to prescribe them often citing they are treating a disease (hypogonadism) of the testes and not the individual, which only serves to highlight a serious flaw in what most would view as a well-oiled system, namely how the individual does not view their breasts, small testes or female adipose tissue as a disease but as an intricate aspect of their existence and something to be celebrated. Often, these individuals must turn to Gender Clinics who are more than willing to help yet seldom understand an XXY’s plight where many are content with just gaining access to hormones and have no wish to undergo genital surgeries as would often be the case for many of their clientele. Such individuals are further ostracised from XXY Support Organisations who view them as a threat to the status quo or worse completely disown them by saying the experience is atypical and better aligned with XY male to Female transgender persons which as previously mentioned is not the case.
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 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 separate 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, by default, everyone who presents with an XXY karyotype is automatically diagnosed with Klinefelter Syndrome.
If you are a GP/MD
And consider yourself to be an expert in all things XXY, then you will never learn anything about us. Adult XXY’s often have adversarial relationships with physicians. If you have a patient like that, don’t take it personally, it’s probably because the medical community has treated us so badly for the last several decades. When we meet a doctor for the first time, we might be wary. We are assessing you as a potential doctor as you are assessing us as a potential patient. Don’t assume that by having gone to Medical School you are more educated than those of us who live it. At the time you went to medical school research done and given to you about XXY was smaller than a paragraph and most all of it was negative.
I need my doctor to keep an open mind. Their main oath is to do no harm- thus I expect them to be interested in new studies on XXY and to educate themselves about the latest research both in hard data and testimonials of XXY people. This means if I say testosterone is making me ill or ask for a trial on estrogen, then please explain to me why or why not without judgement and based on my medical tests. Please respect that I know my body and am in tune with how I feel.
Remember I am a human being first and not a condition, disease, anomaly, or freak of nature. I am so much more than my chromosomes and my physical body parts. Care for my body to keep it healthy but don’t try to manipulate it or change it with hormones or surgery to how you think it should be without asking me first.
Avoid assumptions. Just because I also have a phallus, don’t assume that the best solution is to cut my breasts off. Maybe my breasts are an intricate part of maintaining my inner sense of well-being.
I need my doctor to show me how to give a self-breast exam for breast cancer and teach me how often I should do this.
Take the time to explain the effects of virilizing that testosterone will have on my body and allow me to decide if I want to incorporate body and facial hair, male pattern baldness, and hyper sex drive into my being. When you are considering any treatment or procedure, be sure to also tell me what will happen if I choose to do nothing.
Just because I choose to identify as male and take testosterone does not take away this in-between of XXY. Testosterone does not change my genes. Allow me to talk about how I experience the Intersex quality of my being in an open, non-judgemental place of safety.
XXY’s identify in all genders, from Male to Female, to Non-Binary, to everything in between and beyond. The most important aspect of life for all XXY’s is appropriate medical care, forcing them to limit their gender expression to being Male can be detrimental to their well-being.
Talk to me, not at me and not just about me with my parents. I can understand things if they are explained to me, and I can make decisions about my own body. Be honest with me. Also, ask permission to examine me so I know that you recognise that it is my body and my choice.
Don’t speak in absolutes or tell me how I am going to turn out. Always remember that my needs come before the needs of my parents, my doctors, or society. If you are unsure about my needs, proceed with caution, especially in areas that cannot be undone, such as with a mastectomy.
Allow me or my family to disagree about a particular treatment you wish to try. Be willing to be a part of a respectful negotiation process about any disagreements of treatment.
Celebrate my successes with me. Ask me about my hopes, dreams, and plans.
Ask to see me without my parents always being in the room.
Don’t fix my gender without helping me to understand who I am.
Don’t try to fix me with hormones or surgical intervention before I am old enough to understand. Wait until I am old enough to make my own decisions about my body and my identity.
Things I look for in a doctor
Curiosity, an ability to actively listen, provide cooperative healthcare as in co-relationship, not a doctor “doing” something to me, but a doctor working with me to help me achieve my optimum health.