“We moved on the Tuesday before Labour Day. I knew what the weather was like the second I got up, I knew because I caught my mother sniffing under her arms. She always does that when it’s hot and humid to make sure her deodorant’s working. I don’t use deodorant yet. I don’t think people start to smell bad until they’re at least twelve. So I’ve still got a few months to go.“
This is the start of Judy Bloom’s wonderful ‘Are you there God? It’s me, Margaret’ – and as a woman with Complete Androgen Insensitivity Syndrome, I am now coming up almost 48 and still have armpits that will not tell you if it is hot and humid, which most of the time is a pretty good thing.
Like most other girls who grew up in the 70s and 80s, I loved Judy Bloom. We all shared the books in school and we were all desperate to read ‘that bit’ in Forever – and I will always be unable to say the name ‘Ralph’ with a straight face. My younger sister was bought her copy of ‘Are You There God?’ when she was about 11 – and she was even inspired to start her own secret club based on the book. Every week a group of her friends would meet in our garage to do some bra pinging, before heading off with their notebooks for an afternoon of boy spotting. This mostly involved writing down the names of the boys who lived on our road and then being chased home after accidently giving someone a dirty look or shouting, “Builder’s Bum” at our creepy neighbour. Like the four PTSs (Pre-Teen Sensations), they called themselves the PPBWs (Panty Pad Bra Wearers) and would do a few rounds of “I must, I must, I must increase my Bust” at the start and end of every meeting.
I’m 2-years older than my sister and would have been around 13 when I read ‘Are You There God?’ and at that time I was still expecting puberty to progress in the normal way. But it didn’t – and there were no stories to guide me through my adolescence and into adulthood. Margaret prayed that she would be ‘normal’ and the book is a wonderful way to relieve the many fears about the normal changes that happen to bodies at puberty. It details the excruciatingly painful embarrassment of feeling that your body is out of your control and the importance of being given accurate information about your body. But what if your body is different – and things just don’t happen as you expect? Where was my story and all the information that I needed to know? If I was Margaret, what questions would I have been asking?
Where is my hair and other wonderings?
My best friend when I was 11 was ‘the coolest girl in the school’. She had an older sister and always had that little bit more knowledge than the rest of us. She was the first to have a ‘Frankie Says Relax’ T-shirt, taught us all a dance routine to Toyah’s ‘Street Creature’ and decided that we were going to have a Mods versus Rockers showdown, although I don’t think any of us really knew what Mods or Rockers were, but this didn’t stop us calling the boys Rockers and getting almost every girl in the school marching around the playground shouting “Who do we want, we want Mods, when do we want them? Now”.
Everything seems to change as you come to the end of primary school. We were less interested in skipping and playing bulldogs and more interested in sitting in the cloakroom and chatting. We became aware of the first signs of puberty and gossiped about who was wearing a bra. My friend decided that it would be a great idea to take a poll and ask everyone in our year if they were “growing hair down there”. Although there were lots of shocked faces at the question, most people answered and in nearly all cases the first signs of puberty were doing their thing. Why I was follicly challenged in my nether regions, did not cause me any significant concern at this time. Although I did become more self-conscious as I grew older and still nothing changed – and there continued to be a total lack of hairs springing out of my bikini line. However, I smiled along as my friends talked about shaving under their arms or the pain of waxing, even though the razor remained an object of mystery to me. Amongst all my many hospital appointments, pubic hair or underarm hair was never mentioned and therefore became another part of my body that I just didn’t understand.
I always felt that little bit of shame about my lack of body hair, especially as this has become another area of debate and my naturally hairless state has become associated with pornography. Even Caitlin Moran in ‘How To Be a Woman’ declared a Brazilian to be “a ruinously high maintenance, itchy, cold looking child’s fanny” and stated
“In fact, in recent years I have become more and more didactic about pubic hair – to the point where I now believe that there are only four things a grown, modern woman should have: a pair of yellow shoes (they unexpectedly go with everything) a friend who will come and post bail at 4am, a failsafe pie recipe, and a proper muff. A big, hairy minge. A lovely furry moof that looks – when she sits naked – as if she has a marmoset sitting in her lap”.
When reading this (and I did otherwise love the book), I really wanted to shout out “I would if I could Caitlin, but I can’t”. I’m also a failure on the yellow shoes and pie making, but at least I could do something about that. But no amount of watering or follicle stimulating products will allow me to sprout a proper furry muff. My Brazilian is all au naturel.
One of the great things about finally being given the truth about my diagnosis, was discovering that my lack of body hair was all down to my total lack of sensitivity to androgens. Without a good old dose of testosterone, you will always be fuzz free and never in need of any of the millions of hair removal products that women are told they desperately need. Maybe my perfect bikini line and silky-smooth armpits, make me look as high maintenance as any Love Island Contestant, but I really do laugh in the face of Veet – ha ha!
Along with my lack of body hair, my insensitivity to androgens also means that I have wonderfully fragrant armpits. They just refuse to pong, regardless of how long I ignore them. I could live in a Sauna without soap and still emerge smelling as fresh and lovely as a summer breeze. As a teen, I religiously applied my deodorant to ward off the smells and to feel ‘just like everyone else’, but it is now a good 20-years since I last deodorised and that has to be a bit of a bonus. According to the many deodorant adverts, I am free to wave my arms in the air like I just don’t care, as much as I like – lucky me!
I have also never had a spot, freckles galore, but never a good old squeezable blackhead. This is also probably a good thing, although from watching Dr Pimple videos on YouTube, it does look as if there is something wonderfully satisfying about the perfect pimple squeeze. But along with periods and pubic hair, this is not an experience that I will ever be able to share – and again, this was something that was never discussed with me.
I am not sure if all schools in the 80s followed a similar curriculum, but our sex education came at the end of Form 1 (first year of secondary school, now Year 7). It was the seventh science topic, usually taught in the summer term – and there was much excitement in the weeks before, as it was going to be discussing S E X. As this was all pre-internet, this was how we got most of the information about our bodies and what to expect during puberty. The reality was nowhere near as exciting and mostly involved labelling pictures of male and female reproductive system, although hearing your teacher say ‘ejaculation’ will always be funny when you are 12 (and sadly even when in your 40s). We also spent time in the school library, looking at books about puberty and wondering where we were on the Tanner Stages. During that first year of secondary school, there was also lots of talk about whether you had started your periods, although I don’t remember any excited phone calls of “I got it, I got it” as in ‘Are You There God?’. This talk did become less common as we got older, as it was just accepted that everyone had started and it was therefore no longer something to gossip over – and from discussions with friends, had more frequently become something to endure.
Although I didn’t realise this at the time, there were no pictures in Unit 7 or any of the books on puberty, that described my own anatomy – and I don’t think I’ve ever seen an anatomical drawing detailing the internal anatomy of someone with CAIS. Even when I was told at 14 that my ovaries needed to be removed due to being pre-cancerous (see previous blog – https://differently-normal.com/2020/07/07/girl-in-the-snow/) and was given this as a reason for not having periods, Unit 7 had not prepared me for being able to ask “BUT WHERE IS MY UTERUS”. I feel slightly ashamed of myself now, that even as a bright and intelligent teenager, who was especially good at science – I did not manage to put two and two together and realise that no periods might have something to do with that mysterious uterus that I had labelled with so much care. It was only in my early 20s that I finally found out about the missing uterus and that my doctors had somehow ‘forgotten’ to tell me about this. How this is so easily forgotten, I really don’t know? It is a uterus and something that is really quite important, especially to teenage girls wanting to understand their body. It is not like forgetting to eat your lunch or losing your keys, it is a uterus. I may have to shout uterus a few more times to really hammer this home – UTERUS UTERUS UTERUS!
All of this comes back to the secrecy that surrounded my body – and without accurate information and the opportunity to ask questions, the confusion can very easily lead to silence and shame. Even when I was finally given my diagnosis, the words used to describe my body were frequently dehumanising and stigmatising. My height and long legs were referred to as ‘eunochoid propotions’ and my fairly normal breast development was described as ‘frequently voluptuous’, which is a word that should be banned along with moist and buttons (I also have button phobia, which really is a thing). Even my nipples were horribly described as ‘immature in appearance’, which basically means slightly paler in colour than the average nipple. And who actually writes this stuff – and who do they write it for? If all doctors learn is that women with CAIS are voluptuous eunochoids with immature nipples, how will they ever be able to meet our needs and support us to feel good about our bodies. On the other side, are the discussions of my body being a third, fourth or even fifth sex (thanks Fausto Sterling, I know it was supposed to be ‘tongue in cheek’, but really, was this in our best interests? https://www.researchgate.net/publication/239657377_The_Five_Sexes_Why_Male_and_Female_are_not_Enough ).
All of this has the effect of making you feel like a number of slightly freakish body parts somehow melded together – and that our bodies should be hidden, fetishised or deconstructed. Caught somewhere between sounding like a Love Island Contestant and a Circus Curiosity. These approaches do not centre the needs of people born with intersex variations, as they do not allow us to define ourselves and receive accurate and honest information about our bodies. They do not allow us the opportunity to tell our own stories, in our own words.
My Margaret Moments.
I was finally given accurate information about my diagnosis and my body when I was in my mid-20s. This gave me the opportunity to meet other girls and women like me – and in my late 20s, I attended a number of support groups meetings for women with AIS. Through these meetings I met my very own PTSs, both Pre and Post Teen Sensations, all with different bodies & similar experiences to my own.
I have a great memory of a very drunken evening spent with other androgen insensitive women and terrifying our waiter by demanding he looked at our lovely hairless armpits. We even spent a day designing our very own merkins (genital toupees), wonderfully furry affairs that would even have made Caitlin Moran proud.
Maybe this was my very own Margaret moment – even though I was in my 20s, flashing my armpits and wearing a giant furry muff over my jeans, was my own version of “I must, I must, I must increase my bust”. Women with different bodies, brought together and feeling a sense of belonging from their shared experiences. All of us having experienced a puberty that was anything but expected.
And if you are still there God? We need more of this.