The Secret Inside Me, Part 2: Feeling Shame

“Shame is only good for writing sad poetry like a cutter slowly ticking away at your own flesh to feel something: even if it is only emptiness." Zollie

I didn’t find out I was an intersex individual or the name of my syndrome until I was in my mid-30s. So finding out the truth was a hard pill to swallow. By that age I didn’t suffer from the peer pressure of my high school days, or the angst of my college years of “will anyone ever love me or want to marry me?” By then, I had already had my gonadectomy (when I was 18-years) so I did know I could not have children and, because of that, I didn’t think a man would want to marry someone “damaged” like me. Yes, I felt damaged in my twenties which was an oxymoron to look at me. I knew I turned heads.  However, the look of confidence and swagger was a façade. And that feeling that I was a façade, an empty shell, went deep and grew roots in my marrow.

I did not know that my geneticist, obstetrician, endocrinologist, and parents had lied to me for my “safety and well-being.” They all told me I needed to have a “radical hysterectomy” or I could “die of cancer.” How safe and well was that lie? The experts never really talked to me.  My parents were always led behind closed doors while I waited in waiting rooms. Being a good daughter, I just did what I was told and if I was told I needed to have surgery then so be it. I was terrified. I never told a soul I was afraid. To know me was to see and hear the tall confident and funny person. I never mentioned that in my heart I felt something just wasn’t right about my urgent scheduled surgery. The word “radical” also scared me. My fear made me feel voiceless, weak, ugly, and freakish but, most of all, it made me angry and I didn’t know why. My confusion was a brewing storm.

What really complicated my inner turmoil is that outside family members like aunts, uncles and cousins were told I was in the hospital for an “appendectomy.”  I had freakish feelings when I was a young girl in my early teens because I didn’t have a period, was flat-chested, didn’t grow underarm or pubic hair like my friends talked about happening to them.  So, when I heard the nurses being told to tell anyone if they inquired that I was in the hospital for an appendectomy, my silent fears, confusion, and feelings of being a “freak” made me very depressed and quiet and sad. If I was ashamed before then that sentiment doubled because in my heart I knew I didn’t have a radical hysterectomy or an appendectomy; however, I couldn’t quite pinpoint what really was done and why.

After my surgery and the appendectomy lie, I resigned myself to not giving a fuck anymore about anything.  It hurt me very much when a nosy aunt came to visit me in the hospital and called me a baby for crying. (I was sullen and teary. I never “cried.”) She said I was being silly to feel sorry for myself because an appendectomy wasn’t such a big deal.  The sarcastic busybody just made me retreat into myself even further. It wasn’t her fault of course but I was angry and depressed that whatever was done to me was such a big secret. Because prior to that, I thought I knew everything that was going on with my surgery, which I later found out was an “orchidectomy” or “oophorectomy” which was the removal of my undecended testes.

My research in my 30s told me I was an “intersex” individual and my records stated I had “Testicular Feminizing Syndrome” and that I was an “affected male.” As I said before I felt such relief that I finally knew the truth. My innermost fears about my body became a reality. After that sunk in I got angry. Very angry.  I kept thinking, “Why was I lied to when I was already an adult 18 year old woman?” This question stirred around and around in my head and became a bubbling poison inside of me.  Writing this makes me think of a term which actually describes how I was feeling at the time: I was a “soup sandwich!” Being lied to, was a focus for a very long time. As a result, I despise being lied to and deceived.

Back then, I thought, “Why would they tell a child they had cancer or leukemia but they couldn’t tell an adult young woman the truth?” The anger festered inside of me. I have always been a truth seeker. That has always been my nature. That’s why I studied journalism at university. I learned to get to the bottom of things to seek out the truth.

I also never liked the feelings of shame that I had felt for a very long time.  Having shameful thoughts about oneself is very stressful. It’s like driving your car with expired tags and you are constantly turning your head left then right looking for a police car and being found out. Not a great example but you get my meaning, right? Imagine feeling like that year after year.  I always felt that if I walked into a room of strangers they would be able to tell something different about me. Just because outwardly I appeared a tall, good looking, confident woman, I felt people could tell I was a genetic male. Such poop! But that’s what SHAME did to me.

By the time my anger drove me to try to confront my doctors they had already died. When I confronted my parents about the lying and shame all hell broke loose.  You see, after my surgery all those years ago, they never talked about it to me ever again. Poof! It never happened. Let’s hide the shame under the dingy shag carpet! And, of course, by that time I was too ashamed to bring it up anyway. God forbid that I upset anyone in my family! I tried to have a family meeting to talk openly about AIS and inform them all.  I had made copies of my research to hand out for my intended family meeting but, they all refused to meet. By then, I figured my parents and siblings had already had their meeting without me to discuss my “rampage” and were all unified to block me out.

One sister told me, “If I ever have any questions or want to know anything I’ll seek you out.” Are you kidding me? That was 17 years ago and she has yet to seek me out. When I wanted to talk to my brother – he was already married at the time – he too refused to hear anything about AIS.  All he wanted to know was if he would pass the condition to his children. I said no because it is passed through the maternal line. He thought a moment then he said, “Well, then if it doesn’t affect my children then I don’t want to know about it.” This was a message to me, back then, that he really didn't care what I have gone through with this. It was my cross to bear. I just needed a friend at the time. Someone to talk to. I was reaching out to my brother but he wasn't there for me. Maybe it just embarrassed him. I don't know. And I will never know because I will never attempt to talk with him about anything again. I'll just see him at family gatherings and give the surface hug and kiss and 'how are you' type of conversation. That is what his remark did to me. It pushed me away. Far away. That cavalier announcement broke my heart. I was devastated. I felt so alone. Although I had always felt close to my family, my realization was that I was close with them and, like most families, in times of tragedy we all band together; but this AIS thing, that was mine alone to deal with. That was the message I got from my family members.

Finding a support group was the best thing that ever happened to me. The joy and happiness in finding and being surrounded by your own tribe, your own brethren; the many who had undergone similar or worse circumstances than myself, gave me a feeling of standing my ground and holding my head high.  It’s been a long journey but I can finally say I no longer feel shame for being an intersex individual. I’m proud and my other “orchid” sisters make me feel proud to be part of their tribe. Members of my "tribe" are students, lawyers, artists, singers, writers, and professors seeking and living their dream. Just like the rest of you.

As of this writing, I urge all of you to throw away your shame with me. Walk with me, away from the shame and don’t ever turn back. Shame only makes you regret all the things that you could have done in your life but held yourself back for whatever reason. Trust me. I know.

The bottomless pit of shame is a stifling tourniquet around any motivation or drive or creativity. Shame is only good for writing sad poetry like a cutter slowly ticking away at your own flesh to feel something: even if it is only emptiness.

Resources and Websites:

1. Definition of Intersex via ISNA: http://www.isna.org/faq/what_is_intersex
2. AIS-DSD Support Group: http://www.aisdsd.org/
3. The Kinsey Institute: http://www.kinseyinstitute.org/
4. I recommend reading Alice Dreger's work. She has written "Intersex in the Age of Ethics" and "Handbook for Parents of Children with Disorders of Sex Development (DSD Consortium, 2006)" at http://alicedreger.com/books.html
5. Definition of a DSD: Disorder of Sex Development: http://en.wikipedia.org/wiki/Disorder_of_sexual_development
6. Article on DSD/intersex in Stanford medical magazine: http://stanmed.stanford.edu/2011spring/article4.html
   Gender X - 2011 SPRING - Stanford Medicine Magazine - Stanford University School of Medicine

All rights reserved. Photograph and blog post by Zollies-Spot. Permission is required to copy or disburse any content of Zollies-Spot.