On Turner Syndrome

By looking at me, you can’t tell. You’d assume I’m just your everyday, average short 26-year-old. (I am, but for the purposes of this article, I’m choosing to differentiate myself.) I may come off as a little goofy and childlike, but that’s all part of my charm, or so my husband says. Unless you are a member of my family, or someone I may have actually told, you’d never guess that I was diagnosed as an infant with Turner syndrome.

If you haven’t heard of it, join the club. It’s not widely known (it affects about 1 in 2500 females, and is exclusively a female diagnosis; males with similar symptoms are diagnosed differently), and if the effects are subtle, there are no obvious indicators. It’s also not something that affects many aspects of my everyday life, if it does at all. Granted, there are some things that are different: I have to take a thyroid medication every day, which is caused by the syndrome. I’m short – about 4’11” – and if I hadn’t taken growth hormone shots when I was a child, I would have been shorter. I have a female form, but it’s along the lines of a girl just entering puberty, or perhaps slightly later. I don’t have a menstrual cycle (although I’m not complaining there!). I also cannot have children, at least not through “traditional” conception means.

Time out here, before I continue: please do not feel sorry for me about that last point. I’ve known about this since I was twelve or thirteen, so I’ve had time to accept it. Does that mean that I’m happy with the fact? NO. No, it doesn’t. It does mean, though, that I’m usually able to chalk it up to a crazy random happenstance, and don’t think about it much. Having someone give me that pitying, “Aww, you poor girl,” look or keep telling me that, “hey, you never know, God makes miracles,” just makes me want to punch something and scream at the top of my rather agnostic lungs that what they are saying DOES NOT HELP. It has taken me thirteen years and marrying my husband to realize that I’ not as okay with this as I thought, and their words are futile in helping me feel better. Say that it sucks. Change the subject. Say nothing at all. Just do NOT act like you feel sorry for me. It makes it ten times worse, and that’s why I rarely mention having this condition.

Until recently, I hadn’t bothered to really look into the effects of Turner syndrome. It was just something that I dealt with since as far as I could remember. I knew mostly that the main effects were on me, and since there weren’t many day-to-day reminders, I just kept on living, and even after I did a little bit of research not much, if anything, changed or will change (as it should be). Since I have the mosaic form of the condition anyway, it is even less obvious. I did find a great webpage, though, that helped enlighten me and my husband. Perhaps it will enlighten others as well.

http://turnersyndrome.org/

Questions? Comments? I welcome them. I don’t profess to be an expert, though. :)

5 thoughts on “On Turner Syndrome”

  1. Thank you so much for this! Fellow Turners here, although I’m mosaic – it took hitting the menopause at 22, followed by a round of unsuccessful egg-freezing for me to realise that I REALLY wasn’t okay with the fertility issues associated with TS, despite having convinced myself otherwise. It’s amazing to find someone else who’s been though the same experience. Frustratingly, I’ve found there’s not a massive amount of support for the various emotional ramifications of TS, and it’s something I think a lot of women could really do with.

    1. I agree. I’m also mosaic, so I’m in the exact same boat. I didn’t know it, but TS can actually show some of the same sort of symptoms associated with ADD and Asperger’s, among them difficulty focusing and difficulty processing emotions. I get now that my freakouts over things that most people don’t may be related, and I get now why I thought I was okay with this and it turned out that I wasn’t. Like you, I just whatevered it off… until I got married and discovered I wasn’t. I’m with you in thinking that perhaps others like us may benefit from other experiences.

    1. Bahahaha. This was great. Yeah, I’ve gotten the speeches about “you never know” and “Hey, you can adopt”, and so forth. I just find it hard to verbalize the fact that I am 100% FOR adoption (I’d be a horrible sister to Justin and Brandon if I weren’t), but I hate the invasive, pain-in-the-assness that goes along with it. I understand the need – who wants to send a child to a horrible family if they just came from a bad situation? – but I couldn’t handle the emotional turmoil that goes with the fact that this one agency holds your suture in their hands and that it could disappear in the blink of an eye. If I end up wanting them bad enough, MAYBE I’ll jump through the hoops. But until I choose to do it, I’m not going to, and that’s my (and TJ’s) choice. As far as the “you never know”, I want to hurt people that go with that one. One guy that I work with who, I understand, was trying to be helpful, took like twenty minutes and told me about some sort of festival back in the Philippines for women who can’t have kids and how he was sure it worked. AGH! And people wonder why I never mention that I have this condition at all. It’s like anything else chronic: you have it, you move on, and you prefer not to get treated like you’re somehow a lesser human because of it. Yeesh.

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