Our 12 Year-Old Selves

A series of emails, from the early days (late ‘97) of the AIS Email Circle run by the US support group, has become legendary in the number of times it’s been referred to – and has become known as “Our 12 Year-Old Selves” and was published in issue no. 13 (Autumn 1998) of the UK support group's newsletter, ALIAS:

A CAIS 39 year-old emailed:

I think it's too late to achieve any real progress with my family. I love them but they have never been a meaningful source of emotional support. My main goal is to get the [vaginal] length problem sorted out and try to build a meaningful relationship.

Sometimes (fortunately not all the time) I look back on my life and am flooded with waves of sadness. This weekend my roommate had a friend's 14 year old daughter visiting. She was in the blush of puberty – everything was budding and she was filled with excitement and anticipation. All I recall at that age is overwhelming shame, fear of discovery by my female friends, fear of boyfriends who wanted to go too far (this wasn't my morals kicking in – just raw terror at any below-the-waist contact), carrying around a dreadful secret like a twenty ton weight, and having this sense of being painted into a corner with no idea of how I would get myself out.

I am hurt and angry that because I didn't fall apart in the midst of this and kept up appearances of doing well academically and socially, my over-arching problems were ignored. If I'd had a breakdown at 15, I suspect I would actually be in a better position today; things would have had to come to a head then, (or else I suppose I would have taken my life) and I would have been able to get help (psychological, physical etc.) and been able to build a normal life in my twenties. Instead, by ‘coping’ so well I paid the price in seemingly smaller instalments over a much longer period.

A CAIS 49 year-old emailed:

I just wanted to say that read out your email to my therapist today. It took a very long time because I cried buckets between almost every sentence, so it’s had a good run for its money. Thank you for facilitating the therapy!

The 39 year-old emailed:

Happy to be of help! I hope your therapist can see a little bit of what you've had to endure. To save your parents from mental anguish and having to deal with things, you shouldered more of the burden yourself -– inverse to the way ‘family’ is supposed to work. I remember repeatedly thinking as a teenager “How am I going to get myself out of this?” What I meant was not how would I make it all go away (I knew that was an impossibility). Rather I thought “How am I going to summon up the courage to get the help I need, how am I going to find the strength to talk about it?” (even though I didn't yet know the truth and know what ‘it’ was), “and how the hell am I ever going to build a normal relationship?” I couldn't even imagine telling anyone I was unable to have children and didn't have pubic hair – the two things I actually knew and understood at that age.

The image of being painted into a corner was vivid in my mind since the age of 12 or 13. It haunted me until age 36. I never saw any way out of the corner except by taking my life – until I came across the letter [in the BMJ].¹ The letter wasn't just a release from a corner, it was a release from the prison that was my mind – a place where everything was locked shut inside and could find no freedom of expression. When I read the description, in ALIAS No. 1, of “....the process of hearing oneself actually saying out loud those words that you thought would forever remain as circling thoughts in your head” I convulsed with sobbing (the word convulsing is not an exaggeration – I had never cried from so deep a place or as intensely as when I read that quote). Nothing I ever read so brilliantly depicted how I felt about my life experience and the ordeal of keeping it all locked inside my mind.

Ref 1: See “Boxing Day Thanksgiving” in ALIAS No. 7, Spring 1997.

To carry that much weight on our shoulders at such a young age – coping with infertility and being different and knowing something was terribly wrong with the most private part of our anatomy – and having absolutely no one with whom to share such burdens – I literally shake when I think about what we have lived through as adolescents. To be 11 or 12 and have major life problems with no support or assistance is overwhelming.

I have often told my therapist that I am 'scared' by the realization of what my adolescence was all about. I can't quite explain why I am scared, but I know it scares me to see the enormity of my burden and know that I carried it with me for so much of my life. It would be like looking at a rock and knowing that you carried it 1000 miles and later learning that the rock actually weighed as much as 500 pounds. And to know that in order to survive you could not acknowledge to yourself at the time that you were even carrying a pebble, much less a boulder. Part of the reason that I think the support group can sometimes make it seem that things are worse after you start talking about them is that to survive in an environment without support you have to tell yourself “It's really nothing” or “It's no big deal.” Minimizing the problem is adaptive. Only after finding support can you allow yourself to get in touch with the reality that it is something and that it is a big deal.

I am no longer sad for my present circumstance – in fact I feel I'm quite OK with things as they are and know that I can find some help with even the [vaginal] length issue. But I can't seem to prevent myself from reducing to a puddle of tears when I remember the past – a frightened child, on the verge of adolescence who had to deal with so much without any support. It scares me how seemingly well I coped at that age. I know I must have buried all my feelings and emotions deep within me, just to survive. I wish I could go back in time, so that the ‘me now’ could reach out a hand to the ‘me then’ and tell her she was not all alone. I am in such pain for ‘the me that was’, and I know I haven't shed my last tear for her.²

Ref 2: A book that might be useful is: Reclaiming and Championing Your Inner Child by John Bradshaw, Piatkus, £10.99.

What doctors did to so many of us as teenagers – the ‘public’ viewings, the secrecy, the cryptic comments that hung in the air, the palpable discomfort as they examined us, the total lack of any explanation about what was happening –it wasn't right. I am glad we are able to have a hand in changing the fate of others.

The CAIS 49 year-old emailed:

Even as a very young child, before I really got any hard information, I just knew in my inner being that I was different, some kind of unusual ‘freak’, and that certain very important options in life would just never be mine. Every piece of information I subsequently found out merely confirmed what I already suspected. Nothing was ever really a surprise. I’ll always remember an AIS woman saying at a group meeting that as a child she had always felt that she “knew more than she knew.” I think this is quite common?

A Grade 5 PAIS 44 year-old emailed:

I agree with this. I sensed something too and have tried to recall what made me feel that way. I just knew I was different.

A Swyers 32 year-old emailed:

Wow. All this is painful for me. I too constantly look at that 12 year-old me. I feel I often relate best to kids or the elderly .... once hormones are involved, it can get dicey. Only lately have I been understanding how my body was groaning to go into puberty along with the rest .... but it couldn’t. Sixth grade was one of the loneliest years of my life. I had a dream – the summer before sixth grade while I was staying at my grandmother’s summer house – which really terrified me.

In my dream, I was lying on the floor of a bedroom with my torso in full view covered only by a blue, trainer-bra type camisole and with my pelvis and legs hidden beneath a bunk bed.... [relates sexual dream].... What I am so struck by was that my pelvis was hidden in the dream – completely out of sight – and this area of my body continued to haunt me for so long. It is as if it was a sign that this area of my body was to remain unconscious. Even after getting my Swyer’s Syndrome³ diagnosis at 17, I didn’t understand what happened that sixth grade year. I now have compassion on my 12 year-old self who so desperately wanted to be like other girls.

Ref 3: Also known as XY gonadal dysgenesis. See “Swyer Syndrome” in ALIAS No. 8, Spring 1997.

A CAIS 36 year-old emailed:

When I was 12, I had a recurrent dream that year: maybe four or five times. I dreamt I was lying on a hospital bed with my legs in the air (didn’t know anything about stirrups back then), a single light was right above me, and a masked person, a doctor I assume, was telling me to “Push, push!” I then gave birth to a baby which was alive from the waist up and hard plastic from the waist down. The baby had no identifying features, much like the kind of plastic dolls one got at Christmas (in the 1960s at least).

After about the fourth time of having this nightmare, I started getting very scared. I started telling my mother there was something wrong with me and to please take me to a doctor. I bugged her for many years after that to “please take me to a doctor.” She thought I was weird and that there was nothing wrong with me. When my other sisters started getting their periods I somehow knew I never would. When one of my sisters did not start hers, I knew she was ‘like me’, although I did not know what that meant. We just called ourselves freaks. We didn’t know anything.

A CAIS 45 year-old emailed:

Whenever I get into discussing the nitty-gritty of AIS – the many years of anatomical fear and self-loathing – I realise how tough I’ve had to be; how much I’ve had to resort to denial. First there was all the confusion of having a unique adolescence, which some of you guys have been writing about. When I picture myself at 12, 13, 14, I keep getting this image of a cringing girl with a hand in front of her crotch .... the school change room was always a terrible place. Fortunately, I hung out with other tortured, egg-headish girls, so I didn’t feel completely alone....

I remember having very strong sexual sensations when I was eight or nine (while hugging ______ [boy childhood friend] in his backyard ‘fort’ to be precise) and quite raunchy sexual fantasies when I was 10 - 11. Then my sexuality just disappeared for seven years. I don’t remember having a single sexual sensation, urge, fantasy or anything between 12 and 18. I figure that’s tied to my horror at what was happening to my body.... I gotta say, that discovering my sexual response saved me. I hope I’m not getting too ‘down and dirty’ here, but I was pretty backward sexually and didn’t realise I had a clitoris until I was 19, the year I got my first, false, diagnosis. And I made good use of it during the months when I believed, wrongly, that I would need vaginal surgery in order to have intercourse.⁴

Ref 4: See “What Kind of Outsider?” in ALIAS No. 13, Autumn 1998.

How I hated my body.... I think my AIS sister felt the same way: we never talked about our shared condition until we reached our 30s. Because of my Catholic hangover, and having been raised by pretty lousy parents as well, I equated my wombless, hairless body with some profound badness in myself. Or I’d just look at it and think, you’ll always be a pathetic little 12 year-old....

Another CAIS 30 year-old emailed:

I am dumfounded and amazed at the parallels in all of our stories. Standing on the sidelines as a young girl is an image all too familiar in my mind. I was always apart from the others, not popular at all and very teased. I was pretty much a social misfit.

A CAIS 28 year-old emailed:

All this made me cry – I know this. How I hope that one day my feeling of being ‘on the outside looking in’ will be a faint scar, like that across my abdomen, instead of the open wound that requires constant care.

A CAIS 54 year-old emailed:

Until I started reading all the responses to the ‘12 year-old’ issue, I always thought it was just me.... I too remember standing on the sidelines of the play yard in sixth grade. I too remember a feeling of distance between myself and others. And I too remember feeling that there was something different about me, but not knowing what or why.

The Grade 5 PAIS 44 year-old emailed:

That age is a truly strange one for many of us. I too was a loner. I know people reached out to me, but I locked them all out. I did not want anyone to get close to me, especially women, because they might guess. I know there is a lot of regret for the lost time that AIS, or Swyers, stole from us. After grade nine I was able to take other classes (girls’ choral, or art) in lieu of facing the locker room. It really was a horror show for me too during that time, and, being PAIS, I had a small thatch of pubic hair. It was the fear that they would all ‘know the truth’ that drove me to tears throughout this time. I wonder what I missed, what part of me was lost, in missing the ritual passage to adulthood.

The CAIS 49 year-old emailed:

When I was in crisis mode a few years ago, having talked about my AIS for the first time, I would go to the family doctor from time to time, e.g. for sleeping tablets, and he would try and do the ‘sympathetic counsellor’ thing and say things like “It’s so much more difficult when these things come out later in life – when they haven’t been dealt with earlier” and one time he asked if I’d ever contemplated suicide. I would go in feeling reasonably composed but come out in a heap of tears.

One time he said “I suppose you never really had an adolescence, did you?” and this did it – I was a mess. I’d never really faced this question before. I went home in floods of tears, drank a whole bottle of wine and poured out my heart onto the computer disk (no email pals then), and then one of my beloved pets suddenly had a seizure and died in a horrible way right in front of me. When I took her body to the vet that evening I must have looked really awful. I felt like telling him the whole story! I’ll never forget that awful day. That one casual observation about adolescence brought up so much pain.