Diane's Story

[April 1998]

Excerpted from a talk given to endocrine nurses in April 1998 by a member of our Canadian sister group (see www.aissg.org/12_history.htm#nurses for the full text of her presentation).

When Sheila suggested I come here today to talk about Androgen Insensitivity Syndrome, I wondered what relevance a senior like me could have for a gathering of modern medical professionals. My major experiences with this syndrome happened back in the 30's, the 40's and the 50's. Even to me, that feels like the dark ages.

As Sheila mentioned, I bring you 65 years of personal experience carrying the syndrome. I also bring decades of professional experience counselling adults, children and families who have found themselves stuck in emotional fallout.

As far as I'm concerned, the primary, number one issue is truth-telling. Let me begin with a quote from my own medical file:

"The condition is due to an inherited defect in handling androgen. It is extremely important that they not be told of their abnormality since this causes profound psychological disturbance"

It said "causes" profound psychological disturbance, not "can cause" or "may cause", but "causes".

This definitive statement is not backed up by any clinical literature that I have been able to find. I have not read of one case of "profound psychological disturbance" due to a patient's awarenss of her AIS condition.

On the other hand, there are studies that describe patients who have adjusted well.

It is obvious that profound psychological disturbance as a regular response to awareness of one's AIS condition is a myth.

My opinion is that the physician who originally wrote this notation on my file, and the others who followed that advice, were expressing their own disturbance about ambivalent sexuality - a condition that no medical intervention could change, cure or make go away. The only answer was to hide it

It was made such a secret that I don't have any idea how much my parents knew of my condition, despite the fact of a hernia operation at 3 and a gonadectomy at 20. The circumstances of these operations were so blurred that the reality never came out in the rare discussions I had with them.

Any reasonably sensitive person (especially a child) readily recognizes when others (particularly their parents) are feeling uncomfortable about them.

I knew something was wrong with me. I knew that something unmentionable was a part of my existence, a feeling so troubling that I did as much as possible to avoid it. I tried hard not to think about it. Eventually, all that was left was a general sense of inadequacy and a conviction that it would never go away. My enthusiasm in all parts of my life was dulled. Even my psychiatrist was unable to help me face the cause of my depression. I had the cause so well buried. I'm sure he guessed the cause, but felt his hands were tied by the medical warning that I must not be told.

I believe that, occasionally, some medical people and some family members tried to give me facts. But, certainly, their hesitancy and incompleteness of information only added to the burden that lay upon me.

Now, if you want to talk about "profound psychological disturbance", there was one - a disturbance caused by the attempts not to cause a psychological disturbance. In not telling me, the doctors (and, seemingly, my parents) caused the exact problem they were trying to avoid.

My parents were two very fine people. They only needed information and encouragement. It would have freed their feelings, and mine, so much. If only some wise doctor had encouraged my parents to talk to me. Together we would have had a much different life. Without all the secrecy, confusion and guilt, they could have been in a better space to help me. We wouldn't have had to carry this yoke of silence throughout our life together.

My friends, secrecy doesn't work.

Throughout my life, I picked up bits of information and, finally, at 50 I asked my GP directly if I was born with testicles. Thank God she was as direct with her answer as I was with my question, and the whole story came out. And, with that story, began a freedom from something that had been poisoning me for over 45 years.

But, that was 45 years too late - 45 years of feeling that no matter how hard I tried at life, I wasn't going to succeed, because there was this terrible thing about me. I could tell you a whole history of opportunities not taken because of this feeling, but it would take so long.

I can even remember my mother sharing this feeling about me. When I became at all adventurous as a child, her message was always, "don't try". She overprotected me, which only strengthened my sense that I was essentially doomed to a life of inadequacy.

I remember sitting in my apartment at 33, feeling an utter frustration and sadness about my life. I realized that no matter how hard I tried (and I certainly did try hard), nothing seemed to lead to enjoyment in life. At that point, I knew there was nothing more I could do on my own, and I reluctantly decided to get myself to a psychiatrist. And that's another whole story.

At this point, I would like to plead with you. There are lots of worse things in life than having AIS!

Some human beings are called on to face, handle and overcome far worse things, as you well know.

We all have the right to face the challenges that fate visits upon us and, through facing them, strengthen our capacity to live effectively. To take that opportunity away from any human being is to devalue that life and disrespect an individual's potential for strength. In effect, you are saying, "This person can't be expected to measure up!" You are relegating this person to second class status, really a throw-away person. I have felt that way after talking to medical practitioners who obviously were obfuscating. And, God rest her soul, I certainly felt this from my mother.

I was a pretty strong kid, essentially. Had someone been able to tell me I had a task to handle but help would be available, and they believed I could do it, I would have done it, and I would have faced the rest of my life with a much stronger foundation of self confidence.

It would have been as simple as algebra. I had to take algebra to get into university. I hated it, and I was sure I couldn't do it. Algebra even invaded my sleep and caused nightmares, but my math teacher, who could see I was of at least normal intelligence said, "You can do it - just try - I'll be here when you are really stuck". If he believed I was strong enough to do it, it was sure worth a try. So I tried, and I made it.

I wish my psychiatrist had finally said, "Look, Diane, you have this condition and these are the implications of it. I know this can be a challenge for you, but I am here to help you find ways to handle it. You can do it".

When I was 20, I was told by my G.P. that the gynaecologist wanted to see me again. I hated the gynaecologist. He treated me like an object while he flirted with my mother. I wasn't going back to see him. What could he do for me? I wasn't going to menstruate, and I couldn't have children. That was that, so I didn't go. Nobody followed up to see about it. No one knew that I hated the man. Everyone was more concerned about my father whose serious illness dominated the thoughts of our family and our family doctor. As a result, I was about ten years too late in getting hormone replacement therapy, and now, as a result, I'm visited by osteoporosis.

Sex and the single woman.... This kind of help was not available to me and my family, and how we all suffered. I'm not here to entertain you about my sexual confusions and adventures, but I can tell you I went through three adolecences; as a teen when "the secret" hung heavily over my head and, mixed with teen feelings, had me both deeply frightened and desperate to act on my sexual feelings. But guilt and shame prevailed, and I imposed a chastity upon myself that lasted well past university. My second adolescence came along in my mid 30's when I finally got on hormone replacement therapy (Premarin - my fountain of youth), and I certainly experienced an increase in sexual feelings. Since I suspected there was something wrong with my vagina, I was mortified to think that a sexual partner would reject me, and my naivety that made me think I could actually have intercourse. This I couldn't face. All the old feelings of being a throw-away person returned.

I was approaching middle age when, with a lot of help from Johnny Walker scotch, I finally released myself from my chastity. I turned into a most inappropriate sexual adventurer. Finally, I got myself engaged to a seriously troubled man who was strongly into paranoid schizophrenia. Getting myself out of that got me entertaining ideas of chastity again. Finally, in my late 40's, I awakened to the fact that I am a lesbian, and away I went again - adolescence number 3 - and 10 years of most inappropriate relationships. Luckily, I've calmed down and settled into a mature relationship. But I should have had this decades ago.

No one should have to go through 3 adolescent searchings. Everyone deserves essential information and counselling..