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 to me 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 a 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, 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.