Wednesday, August 24, 2011

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?

Tuesday, August 23, 2011

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.

Tuesday, August 9, 2011

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!

Sunday, August 7, 2011

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.