Saturday, February 27, 2010

Disclosing to Acquaintances

To date, I've "come out" about my AIS to a few dozen people. Reactions have ranged from very positive to pretty indifferent. None have really proven negative. Of course, there are segments of people I am intentionally avoiding (for now). High school classmates from my small, homogenous, Midwestern town for starters. Certain extended family members who I don't feel need to know just now.

I have told a few near-strangers recently. Not because I feel the need to disclose this information to everyone, but because the nonprofit I am a part of (an AIS support group) somehow came up in the context of a conversation. One of these near-strangers, who I had met at a networking event once before, and who I ran into coincidentally at a coffee shop weeks later, seemed pretty taken aback at first. I never would have told him, but he had asked what nonprofit group I was trying to help out, so I thought, "Why not?" and just blurted it out.

He seemed a bit shocked, and I could see him almost unconsciously scanning my face and body before saying, "Well, you could never tell by looking at you!" I was a bit taken aback by that myself for some reason, but then realized, he wasn't saying anything negative. He was probably trying to be somewhat positive. And what's more, he was processing some very unexpected news - which you certainly don't hear every day. And I was certainly nervous, just throwing out all the cards on the table like that to someone I barely knew.

He found the condition interesting, and asked a few follow-up questions. "Is it like Fragile X?" he asked. "Not exactly," I answered. Though I didn't really know what Fragile X was. "Though it is a trait sometimes passed through the X-chromosome. Though sometimes, like in my case, it seems to be spontaneous."

He seemed to want to know more, so I explained what I could about the condition, and how I had only just found out, having been lied to as a teenager. He was sympathetic, and also intrigued. I offered to send him some URLs to read up more on the condition. And he later did, asking one or two follow-up questions.

His reaction was interesting because it was the first time I've really seen someone processing the information in this way. Really wanting to know more and understand it. I wonder if us not knowing each other well gave him more freedom to look at it from a more scientific angle.

At any rate, the experience, while definitely positive, made me think more about ways to disclose this information to people. As well as the variation in reactions I could get - some that might feel negative. I think it's important for those of us who are intersex to realize that to some people this is big, confusing news, and their reactions are going to vary - possibly widely - and we won't always like them.

Rather than fear their reactions, or react in a knee-jerk way, perhaps it is our responsibility to be more informed and more forgiving. Sure, we don't "owe" anyone anything, but only compassion and understanding can breed compassion and understanding. Perhaps we as intersex folks have to be the bigger people.

What about you? How have you disclosed your intersex status? What reactions have you gotten? And in turn, how did you react?


  1. Thinking back in childhood it speaks to isolation and shame my parents felt about my PAIS. Never knew how much the operation cost neither, but I think I was resented because of it. Comments made by their friends to them, like don't touch my child's toy or play on his bike, it will turn gay. These so called friends were there when I was born. I was not aware of my abnormalities but how could I know? Being an adult now, there is no need to bring it up to anyone.

  2. Just an after thought, I believe that its less shameful for a woman than a man to comeout and talk about things like this in public.

  3. Why do you think that it's less shameful for a woman? I haven't given it much thought either way. Do you think because it's perceived as emasculating?

    On the other hand, I know a lot of women for whom their major issue surrounds reproduction. And I think that some of them feel a good deal of shame around not being able to have children. Maybe it's less marked in the US, but in other cultures being "barren" and being female is a double whammy.

  4. Maybe there is no need to bring it up to anyone. However, maybe talking about it to close, trusted friends - even if they are only 1 or 2 of them - would help. Alternatively, maybe joining some sort of support group would greatly help?

  5. I have written some more yesterday on both my blogs. Any feedback is appreciated. thanks

  6. I think your acquaintances reaction is very normal. You were open with this aspect of who you are, and he felt comfortable enough to ask more questions.

    I like it. I think it speaks well for him that he read the articles that you sent.

    I love that you are open, honest and real about this. It isn't anything to be ashamed of. It isn't a BAD thing, it's just a different thing.

    Everyone has something big in their life that is a part of who they are that doesn't really make sense to people outside of the situation. Everyone does. One of yours happens to be AIS.

    Unfortunately, AIS has always been a "taboo" subject - and kept in the dark. We don't talk about it. Because it's in the dark so we don't know enough about it. But finding someone who has it, and is open and honest about how they feel with it... gives us the freedom to learn more.

    The more we know, the less likely we are to make offensive or hurtful comments. :)

    I wouldn't mention it in interviews, or bring it up as the first thing you say aobut yourself because it isn't what defines you.

    What defines you is.. YOU. You are an intelligent person, a writer, an advocate, and so many other amazing and beautiful things.

    Now i'll shut up and mosey along. :)

  7. Desertbon,
    Thank you for your very thoughtful response! I think you are absolutely right. And I appreciate the time you took to read this and respond.

    It is a great perspective to have -- what defines you is YOU. AIS is only a small part of it.

    Thanks again.

  8. Fragile X is a common cause of mental retardation.

  9. Hi Anonymous -- Fragile X *may* cause retardation but is probably not one of the most major causes of it.

    This is also a completely separate condition from mine -- AIS...