A lot of people stare
Caitlin: A lot of people stare. They just stare at me. I get sort of uncomfortable about that.
Mom: Well like, we go to the beach. She wears, you know—
Caitlin: I wear shorts.
Mom: Nobody can tell that she has anything different about her right now, but when she goes swimming, and I take her swimming, people will stare.
Caitlin: I’ll have my stockings on. Like, I’ll wear socks in the water.
Mom: But her legs are different, and even before she had the stockings, she would go to the beach to swim and people would stare. It’s just human nature, I guess, but you know, just mind your own business kind of thing. Like, “What happened to her? Is she hurt? Did she get burned?” Just different things that are rude to me, but I guess they just don’t understand. Some people don’t have that, they just ask anything, but it doesn’t matter what they say.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
I choose where to do it
When I’m wearing pants, especially sweatpants, you can’t notice it. If I’m walking around in a skirt or shorts, oh yeah you’re going to notice it, because the leg is like twice as large as the other leg and I’ve got this huge purple birthmark. When I’m in sweatpants there’s very little size discrepancy, and especially in the school atmosphere I tend to cover myself up more. I’m at a place where I’m comfortable showing my leg but I choose where to do it. In school I tend to kind of keep it quieter, because it’s more distracting if you have people staring at your leg and whispering while you’re trying to concentrate on your schoolwork. And I feel like that’s going to happen, that’s something you have to be prepared for anyplace you go, where you do choose to expose it. In an atmosphere where I need to focus on my schoolwork, I feel like it can still be a little bit distracting to me, so I tend to cover it up when I’m at school. A lot of my school friends, as you kind of develop a more personal relationship with them, they’ll be surprised to find out that I have something wrong with me that’s chronic, because they wouldn’t have been able to tell by looking at me in school.
Erica, young adult, Klippel-Trenaunay syndrome
I don’t generally wear shorts or skirts
I don’t generally wear shorts or skirts. I pretty much wear pants or dresses or long skirts because it just got to a point (and I don’t remember exactly when but maybe like 5th or 6th grade) that everybody in my school and my family knew what was going on, but if I were to go to a beach or a pool or a park, certainly people who had never seen me before were very curious, there was a lot of explaining, and I had to weigh the trade-offs. At least, thankfully, I grew up in a climate where it doesn’t make too much of a difference whether you wear pants or shorts. Thank God I’m not living in Hawaii, but certainly for a while now I don’t wear anything like that.
Sarah, young adult, Klippel-Trenaunay syndrome
I don’t want to be the same
Joe: Kids stare all the time, younger kids, 3-5 year-olds, 3-6, they’ll often stare at me and the parents will be like, “Oh, no!” Just kind of be relaxed about it, you know? It happens all the time, it’s fine.
Mom: Do you feel different or ostracized because of your leg?
Joe: I feel different, but I like it! I don’t want to be the same.
[Later]
Joe: Adult staring doesn’t bother me but it’s a lot different if a 4 year-old is staring at my leg than if an adult’s doing it because there’s a bit of an age jump there, you would think that the adult might know a little bit more.
Joe, pre-teen, and mother, Reticular hemangioma
It looks almost like some sort of dramatic knife injury
I think it comes up a little less often now because my scars are fading a little bit more but it does still come up. I was just at a Red Sox game about a month ago and the person sitting in the row behind me asked where I got my scar on the back of my neck so it does still come up and the scar on the front of my neck is pretty unique I guess. It’s pretty visible and it’s sort of curved so it looks almost like some sort of dramatic knife injury or something like that. So I think people think that there might be some cool story behind it. It almost looks like a bear bite or something like that because it’s curved, it almost doesn’t look surgical.
Kevin, young adult, Gorham Disease
You can’t teach sympathy or empathy
Growing up with LM made a lot of things more difficult. I didn’t really realize I was different than other kids until I was started elementary school. Children would stare, laugh and whisper about me, and they still do. Adults do as well, which is very hurtful and frustrating because as adults, you would hope that they would know better not to be so rude. That really bothers me now as an adult… I have a hard time dealing with my frustrations with how adults treat one another. I know there is nothing I can do. You can’t teach sympathy or empathy.
Emily, adult, Lymphatic malformation