Invisible Harm

I’m a 48–year–old intersex woman born with Androgen Insensitivity Syndrome (AIS) writing to share my personal experience as a patient affected by a Difference of Sex Development (DSD). Although I appear to be a DSD patient “success story”, in fact, I have suffered and am unsatisfied with the way I was treated as a young patient in the 1980’s, and the continued lack of appropriate care for intersex people even today.

As the Executive Director of the advocacy organization Advocates for Informed Choice and a board member of the AIS–DSD Support Group since 2012, I have heard doctors reference the “silent happy majority” of DSD patients all too often. They speak of patients who were treated in childhood and went on to live (seemingly) contented lives. It appears however that doctors have drawn this conclusion from the fact that most of their patients have not returned to complain about their treatment. While there is little evidence to support the success doctors claim, there is quite a bit of evidence that suggests my suffering is the norm rather than the exception.

Medical professionals would likely include me in that “silent majority,” only seeing a woman who identifies and appears typically female, graduated law school, married for over twenty years, with adopted children and a successful career. And while I have been fortunate in many ways, I no longer want my voice to be presumed buried within that silent majority. Instead, I am speaking out today to tell my story.

My Story

At age 15 I was diagnosed with amenorrhea and referred to a reproductive oncologist who told my parents I had a partially developed uterus and ovaries that would likely soon become cancerous. We were told my vagina was abnormally short and might require surgery in order to have heterosexual intercourse.

Neither my parents nor I was ever told I had AIS and XY chromosomes, or that the gonads being removed were testes, not ovaries. I was told I needed a “full hysterectomy” to prevent cancer and hormone replacement therapy. That summer I spent my 16^th birthday recuperating from surgery. I spent the next 25 years living a lie.

A lie that has had a profound and harmful impact on me.

At some level, I knew I was not being told the whole truth. My parents’ and the doctors’ actions signaled to me something more might be going on. But I was afraid to ask questions; my parents were distressed and I didn’t want to cause them any more pain. Over the years I have wondered just how much my parents knew but withheld from me (albeit with good intentions). I sensed something awful was being hidden from me, and I didn’t know whom I could trust.

When I asked my doctor if I could meet someone else with my condition, I was told I was different, that there was “nobody” with my medical condition in the world, that my situation was “very rare.” I was told to get on with my life and not talk about my surgery because it wasn’t important; I was healthy and could adopt if I wanted to become a parent. I was told I must take a hormone pill each day for the rest of my life to stay healthy.

But what I heard was, “you are not a real woman: you are a damaged freak, so go out and fake the rest of your life and be sure nobody knows your secret.” So that’s what I did. I was a “good girl” and took my pills, didn’t ask questions and did what the men in white coats asked me to do. There was no support provided for either my parents or me. No social workers, no therapists. Perhaps most shockingly, there was no true informed consent.

A few years ago I was diagnosed with post-traumatic stress syndrome caused by anxiety I had been harboring for over two decades about my past surgery and fear of getting cancer. I decided to obtain my medical records from the hospital and discover the truth.

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