Perhaps you are a parent of an XXY child and seeking answers to some puzzling questions, or perhaps the child is having a difficult time with Testosterone and you are trying to understand why. From the experiences of XXY’s who contribute here, we hope you will gain greater insight toward the impact Testosterone can have on an XXY body and in the process come to realise hormones are not the be-all and end-all, and that more positive outcomes are possible when the child is fully informed of what is expected of them. Additionally, we hope your overall experience will be positive and you will share this with others.
Perhaps you are an XXY Adult who has been using Testosterone for many years, and you like the impact its had on your overall self, you might describe it as the missing piece of the jigsaw and wish you had been able to access Testosterone when you were much younger, as it may have offset identity and social isolation issues you had to the point of diagnoses and subsequent access to it.
Perhaps you are an XXY Adult who found Testosterone unsettling that it turned your life upside down, and your doctor didn’t understand that rejection. Perhaps as a consequence of Testosterone, it exposed you to Gender Dysphoria and support networks you had in place to that point were hopeless in terms of understanding and support. Perhaps you were able to seek out newer networks and things are better now, or perhaps you didn’t and life is not what you would like it to be.
Perhaps you are an XXY Adult who through using Testosterone have come to reject a “Male” identity but, do not see yourself as Female either, perhaps Gender Queer, Non-Binary, perhaps you are still searching.
Or perhaps you are simply curious about XXY or might know of someone who is and you would like to better support that person. Perhaps you might believe yourself to be XXY.
Whatever the reason that brought you here, we hope the experience will be one of enlightenment and make you realise the broad spectrum of life that being XXY entails, that every person regardless of how they see or live their life is more than worthy of that existence and all that each of us can and should do, is live our lives to the best of our abilities wherever that should lead us.
What We Wish Doctors Knew About XXY
If you are a doctor And consider yourself an expert in all things XXY, then it’s best to leave now because 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 usually because the medical community has treated us badly for the last several decades. When we meet a doctor for the first time, we might be wary, it means 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 virilising 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 my needs come before those of my parents. If you are unsure how to proceed, do so with caution, especially in areas that cannot be undone, such as with a mastectomy.
Ask to see me without my parents always being in the room
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.
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
- An ability to actively listen.
- Provides 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.
This site is for educational purposes only and is not meant to serve as medical advice. We would caution anyone against using this information, in place of seeking real time medical or mental health care. The information should not be considered complete or exhaustive. Do not use the information to diagnose or treat any medical condition. We would encourage you to take the information presented here and discuss it with your treatment providers. If you are not satisfied with their responses, we would encourage you to seek out alternative opinions until you find the answers you need for the XXY individual in question