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 mistreated us for several decades. We might be wary when we meet a doctor for the first time. We assess you as a potential doctor as you consider us a likely patient.

Please don’t assume that you are more knowledgeable by going to Medical School than those of us who live it. When you went to medical school, research done and given to you about XXY was smaller than a paragraph, and most of it was negative.

I need my doctor to keep an open mind. Their primary oath is not to harm. I expect them to be interested in new studies and educate themselves about the latest research in complex data and testimonials of XXY people. If I say testosterone is making me ill or if I ask for a trial of estrogen, please explain the outcome without judgment and based on my medical tests. Please respect that I know my body and am in sync with how I feel.

Remember, I am a human being first, 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 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 off my breasts. 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 virilising effects 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 consider any treatment or procedure, be sure also to tell me what will happen if I choose to do nothing.

Just because I choose to identify my gender as male and take testosterone does not cancel out any in-betweenness I might display. Testosterone does not change my genetics. Let me talk about how I experience the Intersex quality of my being in an open, non-judgmental place of safety. The most important aspect of life for all XXYs is appropriate medical care. Forcing them to limit their gender expression to male-only can harm their well-being.

Talk to me, not at me and not just about me with my parents. I can understand things if explained to me, and I can make decisions about my own body. Be honest with me. Ask permission to examine me so I know that you recognise my body and choice. Don’t speak in absolutes or tell me how I will turn out. Always remember that my needs come before the needs of my parents, my doctors and society. If you are unsure about my needs, please proceed cautiously, especially in areas that cannot be undone, such as 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 regarding 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.

Qualities We Look For In a Doctor

  • Curiosity.
  • An ability to actively listen.
  • Someone who 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 optimal health.