First Openly Intersex Mayor

Hobsons Bay, Australia elected who is believed to be the world's first openly intersex mayor recently.  Tony Briffa was born with Androgen Insensitivity Syndrome, and identifies as both male and female.

http://www.huffingtonpost.com/2011/12/10/tony-briffa-intersex-mayor_n_1140840.html

I found this news really interesting for two reasons:  One, because I am glad to see an intersex person being elected to a very visible role.  And two, because this highlights the fact that not all people with AIS identify as female.  Some identify as male, others as male and female, and still others would choose neither gender.  This is something that I myself have forgotten at times.  Being a member of a support organization where most of the members identify as primarily female makes me forget about those who don't.  I have no real reliable data on the number of people with Mild AIS or Partial AIS, but I have heard anecdotally that they may very well outnumber those of us with the Complete version of the syndrome.

The Results of Disclosure

So... the guy I mentioned a few posts ago has become a bigger part of my life than I expected.  Between then and now, I disclosed to him about my having AIS, before things got too intimate.  He was incredibly cool about it, and continues to amaze me the more I get to know him.  He is truly a remarkable person.

I've decided to refrain from posting much about my personal life outside of AIS, here on the blog.  Not because I am too sensitive about my personal life, but because many of the readers here know who I am in real life, and I am not sure I am wholly comfortable telling all of them the intimate details of my daily life. :)  Rest assured though, that I am actually NOT closeted about having AIS.  Though I do use a pen name here, I find it useful to separate my persona for other reasons not related to being X,Y or intersex.

But back to my disclosure to this amazing person.  Not only has this given me hope for myself in meeting someone really, really wonderful...  This supports the strong belief I have that disclosure is more often than not a positive thing, and that for those of you who fear to tell a potential boyfriend/girlfriend or friend about this portion of your life, more often than not, people are cooler than you might imagine about it.

The fear of disclosure, and the feelings that I have harbored over not telling someone have always been worse than the consequences of actually just "coming out" and telling them.

Best of luck to you all in disclosing as well when the time is right for you.

CAIS Privilege

Although this is a topic that's been on my mind for awhile, I have never really brought up because I sense it could be highly controversial, and might even make a few of you angry.

I have been thinking about the status that women with CAIS (Complete Androgen Insensitivity Syndrome) seem to have within the AIS / DSD and/or intersex "community" (if you can call it a community). As someone with CAIS, I will include myself in this category. I feel like we are the "darlings" of the medical world and the media to some extent. If you don't understand what I mean, please bear with me.

As someone with CAIS, though I am technically intersex, and neither wholly female nor male, I am much more easily accepted as female by the majority of society, by the medical community, and by some others with DSD (disorders of sex development). I fit the paradigm physically more so than many women with Partial AIS or another DSD. What's more, I happen to fit more within the paradigm of what is considered in some circles in society "conventionally" attractive for a woman. I am very feminine, and considered by many to be very attractive. I am straight. (Pretty much anyway. But that's a separate topic.) People will label me just a regular woman with a Y-chromosome. As if my karyotype and my internal testes were more of a fluke or an accident.

Women with other conditions, who were born with anatomy that doesn't so easily fit the paradigm, who might appear more masculine than the ideal feminine paradigm, or who might be attracted to just women or to both men and women - these women bear what I think is a lot more weight in the game. Society is less comfortable with them and their bodies and their identities. And to be frank, I think these women have a tougher time.

I'm not saying that women with CAIS have it easy. We've got plenty to deal with - infertility, fear of rejection by our often straight male partners, and more. Plus, the very idea that we can so easily "pass" as "typical" women, even with our clothes off creates a different type of tension: If no one ever has to know, or would know, do we tell them? Do we have an obligation to?

But many women with PAIS or other DSD never even have that choice. And from birth they are thrust into a world where an immediate surgery or other irrevocable decision might be made for them. And that's just the beginning really.

But what was the point of this post? Really just to get your feedback on this. I am so curious as to how others feel about this idea I have about "CAIS Privilege". Is it valid? Am I crazy? Do you agree or disagree?

Doctor's Response and a Planned Disclosure

I got my first response to my outreach letters a few days ago. From the head of urology at a hospital that treats children, and they are "ramping up" their expertise and services to children with DSD, so he said my letter came at the perfect time!

I am really looking forward to getting contacted the next time they have a patient or family who would like some peer support.

As for the amazing guy I mentioned a few posts previously - he and I have had three "dates" thus far and the next one is scheduled for Sunday. It has been nearly impossible to see each other given my being out of town for work, his being out of town for vacation, and even more trips planned coming up. Aside from that though, I am sensing a slowness on his part. And we are both really patiently and deliberately getting to know one another without rushing anything. I like this approach. A lot.

This guy is really unlike anyone I think I've ever met, and I find myself really treasuring our conversations. There has been absolutely zero physical contact, but due to the nature of our conversations and some email exchanges, I feel in some ways more intimate with him than I have felt with anyone for a very long time.

In this case I've chosen a somewhat phased approach to disclosure of having AIS.

On our third date, my being infertile came up. I had broached the subject in an earlier email where we discussed the pivotal "events" in our lives that had shaped us. He has shared some very heavy stuff with me already, so on date #3 I related the story of my surgery at 17 and the events leading up to it. He now knows exactly what I knew up until 2 1/2 - 3 years ago. I told him there was more to the story, but that I'd have to save the rest for another time given how short our last date had to be.

On Sunday most likely, I'll bring up the AIS. I'm half nervous. And half strangely not. If everything I've interpeted about this guy's character is true, it will be no big deal, and he will respect me more for having shared it with him, and for the positive things I have done with my new-found knowledge.

And if not? Well, I'll cross that bridge then.

His reaction to the infertility issue was surprise that it had really ever bugged anyone else, and reassurance that this wasn't an issue for him. I am crossing my fingers and hoping for an equally positive reaction to the next big "event" in my life where I learned the full truth of my diagnosis.

I'll keep you updated. Send good vibes.

Estradiol Up

As I mentioned, I'm now on .5MG more of Estradiol per day, and I'm taking it approximately half in the morning and half at night. That's 2.5 MG total. I am in my early 30s and weigh about 128lbs.

I might just be my imagination, or any number of other things going on, but I feel a bit moodier than usual. My skip-level manager today made some sort of remark about where I was sitting in a recent meeting. "Do you sit in the third row at church too?" he asked, and I felt so irritated that I wanted to snap, "I don't GO to church!" and see if I could catch him off guard. I've never liked the guy - and always felt he seemed fake, but that feeling is not characteristic of me on a typical day, and I don't think he meant any harm with the question.

At any rate, I wonder if my body is now processing more of the hormones as a result of the timing and the slight up in dosage.

Most of my friends on increased levels of estrogen - both my XX-female friends and my XY-female friends, always note an increase in breast size. That would be a very welcome effect for me, though I may already be at my maximum size given my thin frame and other genetic factors. I've definitely got a very feminine butt and hips. If I could be one cup size bigger on top though - fantastic! Alas, I wouldn't want that at the expense of putting on more weight. The latter is also an effect of increased estrogen. I think I'll be hitting the gym in the next hour or so.

I've been wondering about the effects that testosterone might have on me. Other women I know with complete AIS claim that taking testosterone helps with their energy levels and sex drive. That seems a bit strange, considering we are supposedly insensitive to testosterone, however science and medicine don't have the human body and mind completely figured out yet, so I guess there is a possibility there. I am lucky in that I have never had a problem with my sex drive, and it's definitely increased through my 20s and early 30s. Energy on the other hand, I think I could use more of that sometimes. Although that could probably easily be addressed by sleeping more and working less!

Brief Updates

I met an amazing guy very recently. If experience has taught me anything about blogging - even somewhat anonymously - and having a pretty open, candid dialogue about my having AIS with the new people in my life - it's that I should stop posting any potentially personally-identifiable details here so disaster does not ensue.

So I will say no more, other than I am excited to have met someone with such a great depth of character, who has had to grapple with a lot of unplanned events, as well as struggle with issues surrounding faith and personal identity. I am only just beginning to get to know this person so have not needed to "disclose" anything, but I am hopeful that he will appreciate my own recent revelations and see the parallels between his journey and mine. In the meantime, we will need to wait a bit to see what kind of role he might play in my life.

In other news - I got my medical records from my gynecologist of almost two decades past. They were not very revealing. They did not tell me anything I did not already know, and in some respects seemed a bit incomplete. They made reference to a letter from my surgeon (which I acquired separately). I wonder if they were selective in what they sent to me?

At any rate, I think I have everything I will ever receive now, and that is enough. I wrote and sent letters to both the gyno and the surgeon and made them aware of my knowledge of my condition and asked that they give my contact information to other women and families facing these circumstances. I also sent similar letters to some doctors in my current area. I have still not heard anything from anyone, but hope to get at least a response or two.

At the Endo's Office

I made my first visit to my new doctor yesterday. She's a reproductive endocrinologist. Probably 99% of the women who visit are there about... well, reproduction... I liked my doctor immediately because she recognized that, and rather than pretend like my last endo that she had seen "tons" of patients like me, she admitted she had only had a few. That's a good sign, because statistically speaking, there aren't too many of us out there.

They did a blood test and checked my hormone levels. Things looked a tad bit lower than optimal, so she's changing my Estradiol dosage and timing slightly. I'll take two smaller doses per day rather than one bigger one each evening so that my body can better process it. I'm a little bit nervous about having higher levels of estrogen in my system. My current job doesn't allow me to be irrational or overly emotional, and I guess I'm concerned that this is going to throw me off kilter awhile. I guess we'll see.

Because I arrived at the office so early, I got about 45 minutes to sit in the waiting room and people-watch. I lived in New York City for eight years, and on my daily commute via subway I enjoyed studying each person in the subway car and inventing little fictions about them. Now living in a smaller town without public transport, I have less opportunity to do that, so the waiting room gave me the opportunity.

I watched the heavy-set, nervous couple next to me and imagined the conversations they had about their difficulty conceiving. He did not look happy to be there, and I wondered if he was missing an important day at work, or perhaps insisted that their troubles conceiving were her fault and not his. At least half a dozen different women in their 30s came in alone at different times. Most seemed to be wearing floral skirts, as if the skirt was simpler to remove and put back on again before and after getting up in the stirrups. I'm guessing most were there for fertility treatments of some sort. Another, very sweet-looking couple appeared. The woman's face was pained and concerned. It was only her husband/boyfriend who was called to the back offices, maybe to provide a "sample" of some sort. Finally, a few young women came in and left quickly, their upper arms bandaged, looking relieved as if they'd accomplished something. Norplant recipients I guessed.

It struck me as significant that everyone had come to this same place for such very different reasons. I wished that it were like a marketplace, and people could trade what they didn't want for what they truly desired. It must have been tough for the hopeful couples or the women having trouble getting pregnant watch as others came in for the sole purpose of preventing a pregnancy.

I wondered briefly, as I sometimes do but less and less, about how my own life would have been different had I been a "typical" woman. Fertility could still have been an issue, like for many women. But perhaps I would have found myself making an entirely different set of decisions about my life had certain doors not been closed years ago.

Maybe I would have stayed near my small town and taken that full-ride scholarship that I'd been offered from the state university. Studied something more "reliable" like accounting. Maybe I would have had a boyfriend early on and married young. Had a few children at 25. And never moved anywhere else, or even left the country. Maybe I wouldn't have had half the experiences I've had, or met a quarter of the people... No riding the last waves of the dot-com era in New York. No stumbling out of the Limelight at 4:30 am. No treks through the Thai jungle or late night drinks with AP journalists under the stars in remote Ratanakiri. No list of friends all around the globe I want to visit. No time to study and read and write whatever and wherever it was I wanted.

That's not to say that a different sort of life would not have been fantastic... I once had a small crush on a guy who goes to my gym. Until I found out he was married. To his high school sweetheart. They have three gorgeous little boys. (If given the choice, I would always choose sons over daughters too.) When I learned he was clearly and unambiguously taken, I think I fell in love with his family instead, and I sometimes fantasize about what it would have been like to be him or his wife. To have been born and grow up here, live an "all-American" life, fall in love, marry, and do everything the "traditional" way. There is an odd sort of comfort to the idea, even for me. And a sweetness, which, though it might be illusory, is something I like to think about. I wonder if either of them would look at my life and wonder in the same way.

Letter to My Doctor

I've decided it's time for me to write a letter to the doctor who initially diagnosed me with AIS at the age of seventeen. This is an important step for many of us whom were either lied to, told half-truths, or told, "You are one of only a few people in the world with this, and you'll never meet another person like you," or the also-popular, shame-inducing "Don't tell anyone."

Although I did harbor some anger with my gynecologist for not telling me the truth, and having no plan to ever tell me the truth, and no plan to get me any sort of psychological care post-surgery, I believe that I've worked through that and am in a more positive place. I think instead about what effect I would like to have on her and on the world, and have written a letter which doesn't bring up past grievances, but instead focuses on the future. Here it is below. I would be curious to hear what people think. Her name removed to protect her privacy:

Dear Dr. XYZ:

I am a former patient of yours whom you last saw 17-18 years ago. I visited your office as a teen with primary amenorrhea. Although I do not remember all the details, I recount that I was told that I had a congenital abnormality that had affected my internal, female sex organs, and that if not operated on, would likely become cancerous. Months later in Omaha, I had what I believed to be a hysterectomy performed.

A few years ago, in my early 30s, I discovered the true details surrounding my diagnosis of Androgen Insensitivity Syndrome. Although I was initially shocked and upset to discover the reality of the situation, I have been able to quickly come to terms with the diagnosis. Learning the truth has resolved a lot of unanswered questions about my body, and past events, and in some ways given me greater peace than I had when I thought I was an unfortunate woman with a potentially cancerous deformity. I have also connected with an amazing group of women with AIS and related DSD (disorders of sex development), and am active with a group called the AIS-DSD Support Group for Women and Families.

I write to you for two reasons. First, to request that you and your colleagues who still practice in gynecology, urology, pediatrics and other fields, become more aware of these conditions and more current best-case practices for treatment (which involve full disclosure to the patient over time and as age-appropriate). There is a wonderful network of medical, psychological, and peer support throughout North America surrounding DSD. Second, to offer myself as a resource should anyone in the area be diagnosed with AIS, Sywer Syndrome, Congenital Adrenal Hyperplasia, or other DSD, and want to speak with someone who has lived a similar experience. I have no formal medical training myself, and of course would not offer medical advice. However, I and many others have found that peer support is a crucial piece in living happily with a DSD.

If you or any of your colleagues have met, or meet patients in the future with AIS, Swyer Syndrome, or other DSD, I am glad to offer my contact information to you, your colleagues, or to these patients or their families directly. I am happy to share my experience or relate experiences of friends and acquaintances of mine living with this and similar conditions. To discuss further, you may write to me at the above address, or contact me by phone or email.

Thank you for your time.

Sincerely,

XYZ

Quest for more Medical Records

In a recent post I believe I mentioned wanting to hunt down my remaining medical records, should they still exist. I've had mixed luck. The records from my hernia procedure at age two have already been destroyed. It took place in upstate New York, and New York state law only requires that records for a minor be kept until after the patient reaches the age of 18.

Still working on the records from my gynecologist when I was a teen. Although I have the hospital records which explicitly show that she and the surgeon lied to me, I only just a week ago requested the records from the gynecologist. I am nervous that they will be hidden or destroyed, as I hear is sometimes the case when patients with DSD (disorders of sex development) request them. I grew up in Nebraska, and according to Nebraska state law, the records must have been kept at least ten years, but in practice are often kept longer. Let's hope it's the latter. The last I checked, they had not been faxed yet to my new doctor's office.

Georgetown University has a useful reference on medical records, laws by state, and your rights under HIPAA. Have a look at http://hpi.georgetown.edu/privacy/records.html

Fourth Reading

A good friend did a Tarot reading for me recently. This is the fourth she's done for me, and all have turned out remarkably accurate - for the most part. She predicted I would change jobs, just three weeks after I thought I had "settled" on one. And two weeks later I had an offer paying 50% more at a higher level. She also predicted the course of events related to a family struggle I had, and also relating to a guy I dated over a year ago. (Of course, I could already have seen that latter train wreck coming.)

The only place she's failed is in her foretelling that I would meet a younger and "emotionally volatile, but sincere" man and that we would become a couple. The closest I've gotten to emotionally volatile is a loony actor/model who was three years older, and whose "sincerity" if you can call it that, lasted all of two weeks. So I don't think I've met him yet.

Interestingly, he showed up again (the same card - Page of Cups) in the fourth reading, in the same position. I think I grimaced when she flipped the card, because I felt like he was taunting me. If I didn't get so agitated when she does these readings, I think I could safely call myself an atheist, but something about these cards and the way that the majority of her descriptions seem to come true in the order she predicts still freaks me out a bit. You could call it self-fulfilling prophecy or the tendency humans have to look for patterns, or create them when they're not there. But that would ruin some of the fun.

The biggest takeaway from this last reading was that I've already embarked on some major change. "You've already put it in motion," she said. "You've had your 'Aha!' moment already... It's not about money... It's not about meeting others' expectations... You've been preparing most of your life for this, and you didn't know it." My friend, a Tarot-reading atheist, predicted a focus on something very different, more opportunities for freedom, and a "non-traditional happiness".

I could interpret this as my cue to quit my job and fly back to Cambodia, or even New York, both of which I've been missing a bit recently. I think my tendency is to look for an escape path, or some definitive way to force myself to move on when life isn't perfect, so I am resisting the urge to do something drastic like pack up two suitcases and rent out my condo. (Though I love the idea that I could if I really wanted.)

All superstition and mysticism aside, this friend of mine knows me well, and I think that subconsciously or consciously, she's encouraging me to "get on with it" and enjoy life a little more. I've heard at different times from her that I work too much, that I'm not selfish enough, that I don't make enough demands of other people, or stand up for myself, and I think that she's right.

There is a point to this story - believe it or not. I've been thinking about this in the context of work, and my personal life, and the conference in Seattle last weekend. I am still feeling energized after those four days, and I've used that energy to do a few things get the minimum done at work, in the shortest amount of time, and spend the rest of my energy on my own projects, and my own health. For the latter, I was inspired by some of the lectures I attended at the conference. I called my old gynecologist's office today, and demanded they send me my records from 17 years ago. (I hope they still have them.) Though I think I know them already, I really want all the details they concealed from me so long ago. I also made an appointment in another city with a better endocrinologist than my current one, to talk about my overall health. I'm calling in sick that day and I'm not feeling guilty about it. And I'm going to keep seeing different endos until I find one that I really like - who will educate herself in these conditions if she doesn't know them already, who will really listen to me and work for me, not in some traditionally paternalistic way, where doctors call all the shots because they think they know best. They often don't.

Lastly, I'm not putting so much pressure on myself to make things perfect. I ate scrambled eggs and rice for dinner tonight, and it was delicious. I finished off a bottle of wine that's been sitting in my fridge for the last week. I'm leaving a half-done project lying on my living room floor. And it will likely sit there through the weekend as I go to a few shows in Denver and Boulder. It's summer after all.

And We're Back...

Seattle was brilliant.

Rarely do any of us have the opportunity to meet and reconnect with so many courageous and dynamic people in a single venue. This conference was one of those uncommon moments.

While in this year's story-telling session, and in a few informal group discussions, I found myself thinking about my daily life, and interactions with family, friends and co-workers - and about how superficial most of our conversations really are. In almost "third-grade book report" format, we recount the events of the past weekend or gossip about some trivial situation. But for four days, I had the pleasure of listening and talking about things that truly matter - that get at the roots of human experience, identity, joy and pain. I had more candid, honest and meaningful conversations than I have had for months.

It was both exhilarating and exhausting.

The One Who Tells the Story

"It's hard to be the one who tells the story..."

I quote another woman living with a similar condition, as she begins to tell us about her life. This first, simple phrase stayed with me long beyond the film, and almost a year beyond the conference. Because it is just so true. And because despite the difficulty, it is also so very necessary.

In just a few weeks, I will be in Seattle, surrounded by dozens of other women who must also be the ones to tell their stories. We sit in in a giant circle, seated in hard metal chairs. And each takes her turn telling the story of how it is she has come to be sitting there.

If I were to describe what is said, I feel like it would be a betrayal to these women. So many of them have had lives ten times harder than mine, and I find it difficult to fully comprehend the courage and grace that has helped them survive, and even flourish.

No one wants to be sitting there. Not really anyway. No one would choose this life, and these circumstances, these limits.

But then, there are the things that happen to us, that are beyond our control, and the things that we do in spite of them... While living in Cambodia, years before I discovered my diagnosis, I am grateful to have already learned this lesson in some small part. I have never seen so many people who, faced with so much suffering, still manage to live lives with so much joy...

And so it is with these women. Who despite never having the choices others have had, about their bodies and their futures, choose to live fully and not crippled by fear. They choose honesty. They choose openness. Whether it be to a few dozen in the circle, or to thousands. Because they are willing to tell their stories, they help the ones who are still afraid, and the ones who think they are alone.

I have been thinking about what I'll say this year. I may even write it in advance. I may talk about those I have told. Where it has hurt me. And where it has helped me and has deepened relationships, or just helped someone else feeling a little lost and misunderstood.

It is hard to be the one to tell the story, but I wonder too if it's an odd kind of privilege: To be the one who understands. The one who has had to learn more courage, more conviction, more compassion than she might have, were her story different.

AIS-DSD Annual Conference July 7-10

I wanted to follow up on my last post with a much more upbeat one, and mention how very excited I am about the upcoming AIS-DSD Annual Conference in Seattle, July 7-10.

I know of a few of you who read this blog who have NOT yet attended a conference (and might be a little bit intimidated), and a few of you who already attend. Whatever the case, please consider coming! (It won't be as scary as you anticipated!) Not only is this a great opportunity for education and support, but it is a fantastic way to meet dozens of other women and teens affected by AIS and other DSDs, as well as their spouses, partners, children and families. We have a tremendous amount of fun at these get-togethers. If that were NOT the case, I don't think anyone would go. :)

You will find some high-level information here, on the new AIS-DSD Support Group website (formerly known as AISSG-USA).

I hope to see some new faces this year...