I've decided it's time for me to write a letter to the doctor who initially diagnosed me with AIS at the age of seventeen. This is an important step for many of us whom were either lied to, told half-truths, or told, "You are one of only a few people in the world with this, and you'll never meet another person like you," or the also-popular, shame-inducing "Don't tell anyone."
Although I did harbor some anger with my gynecologist for not telling me the truth, and having no plan to ever tell me the truth, and no plan to get me any sort of psychological care post-surgery, I believe that I've worked through that and am in a more positive place. I think instead about what effect I would like to have on her and on the world, and have written a letter which doesn't bring up past grievances, but instead focuses on the future. Here it is below. I would be curious to hear what people think. Her name removed to protect her privacy:
Dear Dr. XYZ:
I am a former patient of yours whom you last saw 17-18 years ago. I visited your office as a teen with primary amenorrhea. Although I do not remember all the details, I recount that I was told that I had a congenital abnormality that had affected my internal, female sex organs, and that if not operated on, would likely become cancerous. Months later in Omaha, I had what I believed to be a hysterectomy performed.
A few years ago, in my early 30s, I discovered the true details surrounding my diagnosis of Androgen Insensitivity Syndrome. Although I was initially shocked and upset to discover the reality of the situation, I have been able to quickly come to terms with the diagnosis. Learning the truth has resolved a lot of unanswered questions about my body, and past events, and in some ways given me greater peace than I had when I thought I was an unfortunate woman with a potentially cancerous deformity. I have also connected with an amazing group of women with AIS and related DSD (disorders of sex development), and am active with a group called the AIS-DSD Support Group for Women and Families.
I write to you for two reasons. First, to request that you and your colleagues who still practice in gynecology, urology, pediatrics and other fields, become more aware of these conditions and more current best-case practices for treatment (which involve full disclosure to the patient over time and as age-appropriate). There is a wonderful network of medical, psychological, and peer support throughout North America surrounding DSD. Second, to offer myself as a resource should anyone in the area be diagnosed with AIS, Sywer Syndrome, Congenital Adrenal Hyperplasia, or other DSD, and want to speak with someone who has lived a similar experience. I have no formal medical training myself, and of course would not offer medical advice. However, I and many others have found that peer support is a crucial piece in living happily with a DSD.
If you or any of your colleagues have met, or meet patients in the future with AIS, Swyer Syndrome, or other DSD, I am glad to offer my contact information to you, your colleagues, or to these patients or their families directly. I am happy to share my experience or relate experiences of friends and acquaintances of mine living with this and similar conditions. To discuss further, you may write to me at the above address, or contact me by phone or email.
Thank you for your time.