The Annual Conference!

There I was - surrounded by dozens of other women like me. All of us intersex, women with DSDs. Many of them with a "flavor" of AIS like me. Others with related conditions - Swyer's, Congenital Adrenal Hyperplasia, to name a few...

All this was at the annual conference of the AIS Support Group USA. All of us (100+ people total) comprised of women with DSDs, some of our family members, spouses, friends and other support, gathered for a wild weekend in Nashville in late July. I had been mentally "prepared" for the experience by a friend of mine in Denver, who also has AIS. She's a veteran of the conferences and of the group, and told me to prepare for a life-changing experience.

So how did it go? Quite simply, it was great. It put real faces on all the women I've connected with via phone and online. It humanized the conditions for me. Made them more real and also less a stigma. For the most part, I've made peace very quickly with having AIS. I'm not 100% open yet, but have disclosed to many people -- friends, family, and some near-strangers in the right context. What was great about the experience of the conference though, was meeting so many other women with such a similar story and experiences. Women with whom there is no need to explain some things, like infertility or surgeries or why I don't keep tampons in my house. There were some really amazing women there who have stories far more difficult than mine, but who have managed to come out on top of it all.

Then there are the women who struggle daily. Women for whom the condition almost seems to define them. It seems to weigh on them heavily, and prevent them from going after the things they really want in life - be it love or romance or confidence or success. I'm not one to judge, but I do feel like they have more choice and more power than they realize. And I feel like it's part of my mission in this life to help them with that. I'm no model for personal empowerment, but I do believe I've become a better person because of everything that's happened the past few years. My discovery of AIS, my divorce, my job struggles. And I think all of us - myself included - can use a helping hand from time to time...

All of that aside, I had a great time. A lot of laughing and joking and getting to know one another. Some very intense, heavy, emotional time as well. In all a busy, well-rounded, and very "worth it" weekend.

Passers-by to this blog might wonder about the makeup of this crowd of intersex folk looked like. Honestly, as a whole you would not have been able to tell us apart from an informal gathering at a business convention of "typical" XX women. I found myself approached by a few mothers of girls with DSDs, and I at first assumed that they also had AIS, or Swyer's, or some other condition. It was just that difficult to separate the "normals" from the "extraordinaries"....

My big takeaway? I'd strongly suggest anyone out there with a DSD or intersex condition to reach out and meet others with a similar condition. You are NOT alone, regardless of how "rare" your condition is or what you've been told by doctors or parents or other professionals. There are more of us than you think, and we are EVERYWHERE. Across the board, everyone I spoke with seemed to agree that meeting other women with AIS was the most important step in their healing and acceptance process, and I definitely agree.

Revision of AIS on Wikipedia

Several women with AIS and related conditions and I made a major revision to the Wikipedia page for Androgen Insensitivity Syndrome last week.

Previously, a photo of a man with a "micropenis" was the only image shown. He was standing there naked, with a tanline around the watch area visible, and a black box obscuring his face. Classic medical photo "protecting" the subject's identity but inherently also casting shame on the condition. Furthermore, the vast majority of individuals affected with AIS look more female than male and identify as such. This photo was clearly not an accurate representation of the syndrome.

A friend with AIS removed the photo and replaced it with our own: A beautiful color photo of a dozen plus women with AIS and other similar DSDs, all fully clothed and smiling. Check it out on the Wikipedia page under the heading "Variations produced by androgen insensitivity".

This photo was taken at a conference held a few weekends ago for women with AIS and related conditions (Swyer's Syndrome, CAH, and others). I of course was in attendance. It was a great weekend and I will talk more about it when I have time. For now though, the workday is calling my name!

We Want to Hear YOUR Stories

I'd love to have a few "guest bloggers" post to this blog. So, those of you who have AIS or perhaps a related condition, if you have something you'd like to say, please leave me a comment, or email zoech4ng@yahoomail.com. I would definitely like to hear from you, and I'm sure everyone else would too.

You can remain anonymous as you like. You can tell any story you like, or talk about any topic directly or tangentially related to living with AIS or any other DSD/intersex issue. Email me your story and I will post them here, along with whatever type of credit you like. If you prefer to use a pseudonym, that's totally acceptable too.

Looking forward to hearing from several of you I hope!!

Zoe

Disclosing at Work

Have any of you had any experience disclosing your AIS or other intersex status to co-workers or managers?

At the moment, I have no one to disclose to, because I am unemployed and looking for work. However, I have had the opportunity to disclose this information in job interviews. I have not yet, for fear that I might be discriminated against, but it's something I have been thinking about should the right occasion arise.

Let's do a thought experiment: Your prospective employer asks you an interview question like, "What is the biggest obstacle you've ever had to overcome?". Now, if they want the truth, maybe being intersex would be one of the bigger obstacles in one's life. Although, we don't usually talk about our genitals or our chromosomes in those situations, do we?

Or suppose you are being interviewed for a writing job. Or in my case, a web marketing job. The prospective manager wants to know I am fully web savvy and have worked a lot with social media before. Some of my blogs, like this one, would be the perfect thing to show. Yet again, there is a risk there that this type of material would be found inappropriate at this stage in the professional game. Not to mention the bias or prejudice you might encounter when you are too frank, or too genuine.

As I have mentioned before, I have thought about totally "outing" myself in some public forum. And I probably will one day. My real name is so uncommon that there is probably only one of me out there online, and it would not be difficult for me to choose what I'd like people to know about me through a single Google search.

Any thoughts on the matter?

AIS in Chinese

I am pleased to say that I figured out how to say/write "Androgen Insensitivity Syndrome" in Chinese:

"雄激素不敏感综合征"

This might not make a hill of difference to anyone reading, but as a Chinese-American who has not been able to yet become fully proficient in her parent's mother tongue, I was pretty pleased with myself for managing to figure it out based on Google and a Chinese dictionary.

I googled the term and there are a good number of hits, though I can't really read more than 10% of it. ;-) Wish I could, because I'd love to see what is going on in Chinese media and medicine about the condition. Anyone out there know of how the condition is perceived in the non-Western world?

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?

Update on Life in General

My apologies - it's been ages since my last post. I suppose part of it is because my focus on this condition ebbs and flows. AIS is a part of my makeup, and has made me who I am today, but it's not the only thing. Just as we are all a sum of many parts, and arguably, more than just a sum of them.

I guess that was a convoluted way to say I've had other things on my mind these days. ;-)

I've been busy these days - with the job search (I've been unemployed for over a year now), and with a divorce. Yes, the ever-supportive husband I mentioned in previous posts has decided he is done with our relationship. (Those of you who know me personally but don't know I author this blog will likely now know who I am. And yes, this is me. Only I change a few details throughout for anonynmity! ;-))

I mention this as I wonder if my discovery of my AIS was a factor in him falling out of love and wanting to end things. Supportive friends insist that it's not, but I guess the insecurity in me causes me to ask the question. Especially since he brought it up in one of our breakup chats. He suggested I wasn't producing the right hormones or pheromones to keep him interested. He still insists that learning I am 46,xy has nothing to do with his feelings for me, but I do wonder. If the discovery did affect his feelings, I would be a little upset. I don't think there's anything male about me physically. Heck, I went for a huge portion of my adult life not knowing anything was amiss myself, and I live with me every day!

In other news, I've changed the comment settings on this blog so now when anyone comments, I will be notified by email immediately. Before, I would go weeks or months not knowing someone had left a comment or question. This should happen no more! Thanks for all your great comments, observations, questions and support!!

Eden Atwood's "The Opposite of Secret"

From the foreward to singer Eden Atwood's newly published online memoir, The Opposite of Secret: "Eden Atwood led a dramatic, exciting, tumultuous, fascinating life – then she turned 20."

Yes, the sassy, talented and beautiful Atwood (who just happens to have AIS as well), is publishing her book online, one chapter at a time. Her writing style is compelling, and her story one that pulls you in from the opening paragraphs. Read about Atwood's struggles with family, growing up, and of course - AIS:

http://oppositeofsecret.blogspot.com

You can also check out a video interview with this remarkable woman here: