What Would I Have Been Like?

Examining hidden preconceptions & perils of the Intersex Experience (#1)
by Karen Walsh

This question has morphed quite a bit over the years for me. It went from common little girl fantasies of being a traditional Mom & wife, through imagining what I’d be like if I didn’t have Complete Androgen Insensitivity Syndrome (i.e., if I didn’t have CAIS & was “normal”, as the doctors termed it then). The question has finally landed now with my imagining what I’d be like if they hadn’t surgerized me when I was a baby.

Karen, not happy, age 19 months, with her father at the hospital, for her gonadectomy.

This last imagining is the most important one, because it’s about the truth. It’s also grounded in compassion. The truth is that Mother Nature made me an intersex person with CAIS. That meant that I was different than – but not less than – the majority of the population. “Different than” is ok; it’s part of the truth. It acknowledges facts such as the infertility that comes with some intersex bodies; but it also respects our natural embodiment, & doesn’t impose a flawed & biased standard of normalization. “Not less than” is also the truth, & it enables an authentically lived life of autonomy, & reciprocal acceptance & compassion.

 

So, what was my unaltered state, my natural being?

 

How would that have felt throughout my life?

 

Would I have liked it?

 

Would it have been less difficult for me, maybe even not difficult at all?

 

The simple answer is this: I would have been my authentic self. Meaning, I would have been the real “normal” that Mother Nature intended – a healthy, intact, natural being.  

 

Physically

 

I’d have kept my internal testes & they always would have pumped out a lot of testosterone. My endocrine system would have converted some of it to estrogen, establishing a normal balanced mix of my body’s natural hormones, throughout my entire life. I would have had a more feminizing “puberty”, & would probably be about 5’8” tall. (I finally topped out at 5’2” after a growth spurt during my senior year of college. I am the only short member in my family.) Also, I probably wouldn’t have been at such severe risk for osteoporosis, & I probably wouldn’t have always been obese (obesity doesn’t run in my family).

 

That is very different, & much more preferable than the medical complications & diminished quality of life the surgery caused. They include: many problems with exogenous hormones (more on that later), lifelong obesity (consider a lifetime of unopposed estrogen in your body), being at extraordinary risk for osteoporosis, never feeling “right”, depression, & PTSD from the intrusive & unnecessary attention paid to me at the unexplained annual visits to the teaching hospital when I was a kid.

 

Perhaps the most damaging part of all for me was the preconception than my doctors & parents had the right to alter me surgically & hormonally – & then try to lie about it & hope I wouldn’t notice! My massive abdominal scars ensured that I did notice, & made me feel like I had no bodily autonomy or integrity. It shouldn’t have to be explained to anyone, but here goes anyway: No kid wants to feel like Mrs. Potato Head.

Karen, age 3, still not happy. I know that “something’s up that they’re not telling me”

 

A special note about exogenous versus endogenous hormones, & some of the misconceptions about the effectiveness of testosterone for CAIS women. For about 40 years I was on Premarin only (estrogen pills made from pregnant mare’s urine); then I was on transdermal estradiol & transdermal testosterone for about a year & a half. About 2 years ago I switched to testosterone alone as my hormone replacement therapy (HRT). During all those years of taking artificially manufactured estrogen, it was like riding an angry dragon. It wasn’t a fun ride. The only tangible things it did for me was to destabilize my mood, increase depression, cause constant weight problems, & just generally make me feel “not right”. Since switching to testosterone only, there is no mood destabilization, a lessening of depression, a better mental alertness & general sense of wellbeing, & more stabilization of my weight. (As an aside, the only time in my life when I was not obese was my last 2 years of high school & my 4 years of college, during which I had rebelled against taking the prescribed HRT.) Never let a doctor tell you that hormone prescriptions are as good as the real thing – they are not.

 

 

 

Psychologically

 

Another part of the comprehensive answer is that I would have had a better psychological life. I would have felt natural & accepted, since my medical treatment would not have been invasive or fostered all the secrecy, shame, depression, PTSD & body image issues. I could have properly mourned & come to acceptance of my infertility at an early age, instead of struggling with my unexpressed feelings about it (unexpressed because parents & doctors wouldn’t allow it to be discussed). I would never have had to ride the angry dragon & experience the artificial mood swings caused by the prescribed hormone pills. Since we know our brains also have receptors for hormones (in addition to our sex organs), I would have had a natural balance of testosterone & estrogen. I imagine that would be more like a walk in the park than a turbulent dragon flight.

 

I imagine how good all of these positive effects would have felt throughout my entire life. Yes, it would have felt much less difficult than what my life has been. And yes, I would have liked it. The most convincing validation for my answers here is that I am now mimicking, as closely as possible, my natural-born state by using testosterone alone for my HRT. That has been a sea change for me. It is less difficult & I like it better. I am still left with the sadness & frustration though about having to replace what was taken from me. If they had just left my healthy testes alone …

 

So, my imagining what I’d be like if they hadn’t surgerized me when I was a baby has been a healthy exercise for me. Unlike fantasizing about being a traditional mother/wife, or bemoaning that I am “not normal” like other women, it has caused me to look more closely at the truth, & to seek better care. I have more compassion for myself, understanding that my CAIS is just a natural occurrence & that it doesn’t mean that I was born flawed or broken.

 

Yes, they should have left me alone – but I’m doing what I can now to live as natural a life as possible, & to help others do the same. It has also been healthy & empowering for me to advocate for intersex youth. No one else should have to go through what I’ve gone through. Everyone deserves to live a natural & authentic life, & to make their own informed choices.  And that’s one of the reasons why I am a proud member of interACT’s Board of Directors.

 

We can all help, in our own ways, to make things better. I applaud recent events that have highlighted how far we still need to go to recognize intersex lives as full, productive & worth living. Kudos & profound admiration to Hanne Gaby Odeile for being so outspoken & generous with her own story (https://interactadvocates.org/wp-content/uploads/2017/01/PRESSRELEASE-HannesAnnouncement.pdf), & her advocacy efforts (https://www.youtube.com/watch?v=H_5BFmwNk-s). I am also grateful to the World Health Organization & Human Rights Watch for becoming involved to help protect intersex kids. Onward & upward to a better future for all intersex kids & adults!