carlasosenko May 31, 2009 Faves, Marie Claire, Writing

What the Guys I Date Don’t Know

My essay on trying to date while living with the disfiguring congenital disorder Klippel-Trenaunay syndrome. Originally published in Marie Claire.

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Melissa says:

May 19, 2009 at 3:07 am

Hi Carla, I actually just read your article in Marie Claire and wanted to find a way to comment on your article. I was absolutely floored by what it was all about. I too have K-T and have a huge issue with dating. Well really dating for me seems to be nonexistent. It is frankly ridiculous sometimes on the everyday effort I put into con-sealing my oversized left leg so that I won’t be questioned or looked at strangely by my friends and colleagues.

Anyway, I appreciate your article. I guess some pieces of writing come in unexpected publications and in this case one that I rarely ever read. I feel like you have to have a lot of courage and respect for yourself to put yourself out there.

Thanks a bunch and keep it up!
Melissa.

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Katie says:

May 19, 2009 at 11:50 am

I can relate although I have something different. I had a disease that made me gain fluid weight and left me covered in permanent stretch marks. People say things to me all of the time. It’s not much fun.

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Gina says:

May 19, 2009 at 1:36 pm

Hello,

I too have a port-wine stain. Thank you for your memoir, it made my day!

Gina

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Rebecca says:

May 19, 2009 at 2:09 pm

Hi Carla!

Thank you SOOOOOO much for writing that article (I just read it on aol and linked-in wanted to charge me for emailing you directly (!!!), so I’m glad to find your blog)–I don’t have K-T, but I do have a dicey bunch of reproductive issues that make my inital stages of dating feel a whole lot like what you described (since no guys can tell on the outside what kinds of challenges they’ll be in for if they stay with me). It made me feel so much better to read your article, finally getting that I’m not the only woman in the world who has such an internally hard time opening up about my body’s challenges and facing whatever rejection comes before acceptance comes along–and learning to accept myself as I am. Truth be told, I’m tearing up as I write this–which lets me know how little understanding I’ve really felt from others about this–and how, even though it sucks that we’ve all got these challenges, that we’re not the only ones going through it at all. Thank you SO much for sharing this article. I really, really, really appreciate it.

🙂 Rebecca

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jess says:

May 19, 2009 at 2:10 pm

Really excellent piece. Isn’t it amazing what we have to go through as women? That we’re made to feel that being smart and funny and nice aren’t enough because it always comes down to superficial issues?

While nothing at all like K-T, I can sympathize with some of my own problems. Fortunately for me, I was able to correct some of it with surgery. But it’s still so upsetting to think that something so … surface .. can create so many problems.

Thank you for putting yourself out there.

From one writer to another, Jessica

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kidish says:

May 19, 2009 at 3:05 pm

I read the article on AOL Health. I likewise have KTS, as I mentioned in a previous comment. This is a good article. Lots of guts, but then again, those of us with this disorder generally have that in spades.

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Mona says:

May 19, 2009 at 7:26 pm

I was so touched by your article, mostly because we have such similar experiences and it takes a lot of guts to write in the frank and candid way you did. While I don’t have KTS, my body is scarred from a series of surgeries I had to undergo years ago. I’m in my early 20’s and I’ve only recently made peace with myself about my body. Like you, I’m often told that I’m cool and beautiful but once the rest is revealed, they run for the hills. Just recently this year, I had my heart broken because of it and it made me realize that it may be a blessing (as well as a curse). It’s a way to weed out the frogs until we find a prince (cliche, I know). At the moment, I’m an aspiring writer and your article has reminded me of why it is so important to write. Writing defends the underdog, even if the underdog is ourselves.

Good luck Carla, I wish you a lot of success.

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stacy says:

May 19, 2009 at 7:42 pm

I was so moved by your article I had to write. While I dont have your same disability, I am HIV+ and when people look at you so healthy and are like “oh my gosh, you are the perfect girl..you do all the things I love to do, youre beautiful and no kids too? Thats just awesome!” My heart breaks that I have to screen men on whether or not they want to have kids, do they have germ phobias? (I have the ultimate cootie..LOL) How do they feel about condoms? Cuz they are gonna be wearing them their whole life if they are with me! Needless to say, I’ve found love more than once since this affliction…even have a couple of ex husbands out there who are still negative to this date, and Ive been living with this for almost 20 years! So dont worry about finding the man of your dreams too much..it will happen as I’m in a relationship that is almost 4 years long and its still super passionate and wonderful and my health is just amazing! God Bless you and remember that for that one reject, there is 5 others in line who will be like “wish I had a girl like her!”
Stacy

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Gina says:

May 22, 2009 at 7:38 pm

Hi Carla, I’ve only read a portion of your article. It means so much to me as I have battled KTS for 28 years. The past two years have been difficult in that I have had numerous surgeries and almost died from DVT and extreme blood loss issues. I know how embarrassing it is to date (although I did marry and have a child) and now (after a divorce) I am having little luck in the dating scene. I’m at a point in my life though, where I have found self-confidence and true peace, plus true love with my daughter–she’s the best! And I just want to get better so I can grow old with her.

You’ll be in my prayers.
Gina

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Megan says:

May 31, 2009 at 2:31 pm

Hey Carla-

I absolutely loved your article. I cried when I read it, because it described everything I fear and deal with every day. I also have KT, and it definitely makes it hard to meet new people. They always ask the questions that I try to stay away from answering, like “Why is your arm bigger?” and “Why do you have red skin?”

As far as dating…men tend to look at me and toss me automatically into the “friend zone” simply because of the way I look. It’s sad that a superficial abnormality (mine is redness on 80% of my skin and a larger left arm) can inhibit personal relationships as much as it does.

You’ve got a lot of guts for writing about this, and for continuing to “get back on the horse,” so to speak, when things don’t go perfectly. I wish I had your confidence! Maybe some day I will, though. 🙂

Keep it up!
~megan.

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Brian says:

June 22, 2009 at 12:15 pm

The right person will love you for who you are, not only how you look. The right person is out there; maybe even reading this blog.

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Ryann says:

June 29, 2009 at 7:21 pm

Hi all!

I also have KT. For those who do not have it, some background facts are helpful. KT is very rare! (Maybe 1,500 cases worldwide.) Most adults with KT grew up being stigmatized and photographed by medical professionals. It’s such an unusual childhood.

While I’ve gotten plenty of positive feedback about my looks over the years, having pictures of my deformity taken by doctors really harmed me. I don’t think people with KT come to see themselves as sexually desirable in quite the same way that other women do as they go through puberty. Further, puberty causes a lot of pain for people with KT. Those years between 11 and 18 are more painful and scary than they are exciting. I think you see reverbations of that in adult KT patients.

Carla- I liked your article! I’m so glad that the internet has made it possible for people with this rare condition to have contact:) Incidentally, I have a great radiologist who has helped me a lot. Please let me know if you would like his contact info!

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JV says:

July 2, 2009 at 12:58 pm

THIS ONLY BECOMES A PROBLEM when you don’t mention it in advance and try to hide it on your first date. Stop that! What, are you afraid guys are going to fetish your deformities? You have to stop projecting your issues onto the men, most of whom don’t care.

But I guess the dating culture in New York, or wherever you live, won’t help. Brr. The main thing that stays with me after reading is a feeling that your whole situation is screwed up (I don’t mean physically) and I’m glad I have a normal social life and meet people in a normal situations.

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Lisa says:

July 6, 2009 at 10:11 am

I just wanted to let you now how much your article in Marie Claire resonated with me, and how much I appreciated it. Though I don’t have KT, the way you expained living with it and how it affects your dating life and relationships, I can totally relate. My very first boyfriend gave me Herpes when I was 18 years old, and for the past 15 years, I feel like I have been trying to “handle” it. What I mean is, explaining it to potential partners, dealing with the possible (and sometimes eventual) rejection, etc. I find too that when I first begin dating someone, and they are pretty much falling all over me, I hold back, because I am thinking in the back of mind…”wait til you hear about this…you’ll be changing your tune buddy.” So, I just want to say it was nice to hear other women are dealing with similar situations, despite very different circumstances.

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Robin says:

July 12, 2009 at 8:26 am

Hi Carla,

I don’t know if you remember me but I was friends with your friend Daniella in college and we’ve met before. I was just reading Marie Claire and realized that you were the girl whose article I was reading!

I think you are great and that it is a good decision to go public. You are probably going to help a lot of girls out there. Also, when we teens, we want to look just like everyone else. When you become an adult and have a career you love, great friends, a cool apartment, you realize that the shape of your body is not the most defining thing in your life.

It doesn’t matter if some guys don’t like you because there are lots of guys who would love to date you! I think you have come to the same place in your life as me, where you realize you are more than your condition and that you are worthy of love for all of your good qualities.

I would say, go date guys, get to know them. If you hook up with them and they don’t understand, then just explain it to them. When I read the article I was really happy for you because it sounds like you’ve found a level of self love and self acceptance that most girls could use! Can’t wait for your book to come out 🙂

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Shauna says:

July 18, 2009 at 11:02 pm

What a riveting piece! I admire your confidence and found it refreshing.

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S says:

August 3, 2009 at 10:50 pm

Your article was so familiar. I too have KT and always try to hide the syndrome with clothes. The ‘realization’ moment eventually occurs and reactions have been crushing. Thanks for the article.

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Maddy says:

August 12, 2009 at 3:23 am

Hi Carla,
Like most of the people who have commented on this article, I too have KTS. Life with KTS definitely has its negative aspects and there are so little people who understand what you are going through which can make dating life completely backwards and solitary. As a 19 year old college student who has dealt with the fear of rejection from silly boys and the wonderful ability to hide myself from others with the blessing of pants, it makes life all the harder to raise my head high and let them know that I have this thing that makes me feel like a freak show. Although my KTS is on the very mild spectrum I’ve been receiving treatments which will make me feel “perfect.” Your article has filled me with hope that even laser treatments and schlerotherapy can not provide and I also hope that the treatments leave a little of my KTS behind because with out it I wouldn’t be the person I am today. I think you’re an amazing person who is beautiful inside and out.

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Stacey says:

September 9, 2009 at 3:07 pm

I was diagnosed with Klippel-Trenaunay-Weber Syndrome when I was 11 months old. At that time there were only approximately 140 cases diagnosed in the world. I always thought I was the only one that had to go through this and of course no one else really understands what it’s like. My left leg is bigger than my right, my right arm is bigger than my left, my back is slightly curved to the left and I have many birth marks all over my body. As a child doctors would ask my parents to leave the room so they could ask if they were bruises and the nurse at school always thought I had scoliosis. Those are still questions I get asked today. My mom was at a doctors office and came across your article and couldn’t wait to show me. My dad read it and said, “Wow Stace I’m so glad you got over it.” He still doesn’t understand that everyday starts off with, “Where am I going today and what can I wear so no one stares?” Just like you wrote in your article, I am very lucky because it could absolutely be much worse. As a child the doctors didn’t think I’d be able to participate in sports and dancing and they recommended a back brace and potentially removing the growth plate from my leg. I was able to participate in all activities as i grew up with no barriers and I never needed the back brace or the surgery. Sneakers and pants got me through my childhood, although the kilt in private school did a disservice (boys are mean). But I have learned to be honest with my friends and even strangers in the community because the stares and the questions are just curiosity of something that is different. I never really “got over it” like my dad thought, because comments and stares still hurt, but I don’t like to live my life hidden every day. It’s a part of me and it always will be. I finally introduced myself to flip flops and capri pants about 2 years ago. Dresses and skirts have also become my friends (sometimes) 🙂 I just want to Thank You for writing this article and showing me that I’m not the only one.

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Karen says:

March 12, 2010 at 3:11 pm

I too was born with KTS- undiagnosed until age 19. I think your piece was wonderful. I had similar feelings to you when dating but I have grown to accept the body God gave me and I have a gorgeous husband, a job I love, a supportive family and wonderful friends—I sometimes forget I have the syndrome at all!!! I would encourage everyone with KTS to give themselves time and space to accept their own body and work through the negative feelings- especially during those body conscious teenage years.

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Daniela says:

May 18, 2010 at 7:54 am

Hello, I too have a KTS. I have 26 years old and when I born I have this problem.
Is difficult for me don’t wear clothes like other girl. Sometimes I think that this is a horrible disease. But I have a good boyfriend that love me with my problem, you know my red leg and you accept this. I think is difficult for other person don’t watch my different leg but sometimes my friends tell me “It’s no much different”, but I know that is not the truth but I appreciate their loveable opinion.

Thanks to write this article, I’m happy to know that other person are in my situation.

A big hug to all. Sorry for my English, I’m Italian and I don’t write well on English.

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Jane says:

May 21, 2011 at 11:22 am

Great article, I can’t believe I only just saw it! Thanks for writing about KT. Like you, I am relatively mildly affected – it’s just a cosmetic issue (my left arm, hand, a bit of my upper left torso and the back of my neck/head . . . oh, the ‘meatballs’ – luckily disguised by my hair!). Most discussions on KT support groups about amputations, pain etc. do not apply to me. It’s good to get the perspective of someone for whom it is not so much a medical issue as a confidence one.

Anyway. I got excited to read your stuff. I have a few things to say, which have grown from my own experiences:

As a child, I didn’t think there was anything the matter at all really. My wise mother explained that in the playground, other children might ask about my arm, and I should show them, and say ‘it’s a birthmark’, which was always a successful technique and interest lasted, usually, about 15 seconds (I used to show it off as a bit of a party trick actually). Then teenager-dom happened, and I got all shy and horrified, hiding behind sweaters with long sleeves. But then, when I was 16, I started life modelling. It was a revelation! Prior to that I thought that boys would find me hideous (my left breast is quite squashed and lumpy). My dad (who is an artist) suggested the modelling, and I thought to myself . . . what’s the worst that can happen? Do it, so I did it. You should do it too! I went to a few classes myself, and modelled for about five years. Gradually, I realised that everyone is weird and lumpy and disgusting, and when 20 people are looking at your nooks and crannies trying to draw them, and not one of them is grimacing, or even looking surprised [turns out lots of them thought they were getting the perspective wrong when they tried to draw my arms!], well, it sweeps your fears away.

Subsequently I’ve slept with lots of men, and not a single one has been ‘put off’ [as far as I know]. Then I got married. He has a little paunch. He has a big appendix scar. He has a spotty bum. I have a lumpy back and head. And we are soul mates. And I find him sexy – warts and all – and he reciprocates. Of the people you like the most, do you like them because they are beautiful? (I hope not) Or do they become more beautiful, the more you like them . . .?

Nowadays (I am 29), I talk about KT and show people my ‘defects’ if it should come up in conversation, or if they ask. But, a bit like in the playground, the truth is that no-one is really all that interested. If we talk about it in the pub, the attention span is about two minutes, and I find I’m still enthusiastically discussing it while my audience has wandered off to change the tune on the jukebox. People are much, much more interested in themselves than in anyone else!

Finally, a little amusing tale . . .

I am lucky physically in other respects, I am 5’10” tall and very slender with long slim legs. I also have nice thick hair, big blue eyes and a very large smile. I was shopping with a petite girl friend, who picked a stylish jacket from the rack for me to try on. I sighed and pointed out that it would never fit over my big arm. I tried it on, to demonstrate, and got my arm stuck in it. I required assistance to extricate myself. With her holding the jacket, and me bracing myself, we managed to peel it off again, as she laughed, and said “I always thought you looked like a model and could wear anything! We all have out own thing we can’t find clothes to fit (she has short legs, for example) . . . Yours is SO FUNNY! And I’m glad you’re not perfect!” And she was right. It is funny, so I laughed hysterically too.

All the best.

Jane

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Scott Spafford says:

September 17, 2011 at 7:06 am

Hi Carla,
I have K-T, didn’t realize it until recently. My leg is 25% covered by PWS and have varicose veins. And doctors are clueless. When I was 13, I was invited to the beach by a girl who insisted I wear jeans. The problem with being outwardly attractive is that a person draws the attention of otherwise shallow people and it can be difficult to spring the K-T secret on them. I have experienced at least a 4 in 5 rejection rate when I was dating because of the K-T. Thank you for drawing attention to our dilema.
Scott
Belvidere, Il

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Gary Leonard says:

March 12, 2012 at 11:02 pm

hey Carla I posted on your musing by mistake there.my name is Gary Leonard am 30 year old from ireland and is my story.I have klippel trenaunay weber syndrome with birthmarks on my back arms and hands.left leg bigger and shorter than right.left breast bit bigger than right.and web toe on left foot.I look normal with cloths on people couldn’t even tell only for birthmarks on my hands which is pinky light red.I don’t wear short sleeve tshirt or shorts.not sense I was younger.I know most people are kind and won’t say anything but I fear someone will say something and I’ll get embarrass.I’ve always been popular in school and have loads of friends cause I always look on bright side and am funny but I’ve even kept it hidden from them maybe the notice my birthmarks on hands but just didn’t want to say anything.I no problem chatting up girls when I’m out but I do need a few drinks but I never let it go any further cause the fear of having to take my cloths off and then having to explain.I also am a really Gud singer well so my friends tell me but I lack confidence to do anything about it which sucks.I’d love to meet and talk to people the same as me I’d feel so comfortable with them.I’m also on Facebook… leonardgary@hotmail.co.uk

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What the Guys I Date Don’t Know

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