Ali von Klan
July 18, 2014 / San Francisco, California, USA
Well, to start, my name is Ali and I’m 25 years old.
I currently live in Raleigh, North Carolina. I have a dog named Loki. I’m supported by my family, my community, and friends. I have a loving and caring and supportive significant other. And, I have an intersex condition called Swyer Syndrome.
Essentially, to me, that means that I’m an otherwise presenting woman to the outside world. I look completely feminine. I discovered that I have an intersex condition when I was 16. I felt up until that point completely … that I’d grow up to be like any other woman in my family.
I impatiently waited for my period, and when that day never came I went in for a routine lab work and an MRI and we discovered that my body did not develop gonads or ovaries. Because of this doctors told me that I was an infertile woman, that I also possessed male chromosomes - he used the word “male,” and that I would have to take endogenous estrogen for the rest of my life.
At this time during adolescence I felt very confused by this information, felt alone. This was in 2005. I greatly wish that my specialist would have informed me that just an hour south of that appointment, that year, there would be a support group conference for intersex adults in Palo Alto (Calif.) and that information was never provided. I went home from that appointment ashamed of my infertility, ashamed of my chromosomal difference, and alone.
I sought ways to control my body via dieting, compulsive exercising, I wore a girdle for about two years to school to mimic a feminine form. I was extremely disappointed in my undeveloped breast tissue and for that reason I was very uncomfortable undressing in front of others. I avoided intimacy. I used my body as an excuse to keep other people at arm’s reach.
Again, I did not have a community of people with Swyer Syndrome or similar genetic disorders to talk to. I was afraid of the word intersex, honestly. I was afraid of what it would mean to tell someone that I was intersex - to tell my classmates that I don’t get a period, that I don’t have a tampon to give to you, and that I don’t enjoy having sex because I was afraid of my body and what that would mean to be really close and intimate with someone and they might discover my difference.
My bodily shame went to such an extreme that at 18 years old I had an appointment with a plastic surgeon, he had my permission to examine my body. He told me I was the perfect candidate for breast implants.
Again, I felt alone, ashamed of my body, and I underwent the procedure and I still felt very uncomfortable with the way my body looked. At that point, I still felt like someone would see my body and label me as unfeminine or not “womanly” enough to not have a natural female form.
I continued to feel different and alone until I was able to find a community, a support group of people, who also have similar intersex conditions, who have undergone similar journeys towards self-acceptance.
I want parents and doctors and caregivers to know that having an intersex condition, or identifying as intersex, is completely normal. We might have atypical conditions but we’re not atypical people. We have hearts and minds just like everyone else, and we deserve compassionate care. We deserve to not feel alone and afraid and to not try to obsess and compulsively control our bodies to feel normal.
I want to send a message to teens, adults, parents, doctors to not obsessively control our bodies to fit into a norm so that we can learn to love ourselves and our bodies and know that No Body Is Shameful ®.