They all want to help her
Caitlin: Sometimes they tease me if I’m in my wheelchair, like, “How can you walk if you’re in a wheelchair?” They always ask me questions and stuff.
Mom: Last year she had an episode where she could not straighten her leg. She went through major physical therapy, but she was confined to a wheelchair. She had never been completely confined to the wheelchair before, and that was like, for 6 months. But I’d always worried that kids were going to tease her. Before she used the wheelchair, she just walked really slow, it was really hard and the kids would say, “You’re slow!” and stuff like that.
Caitlin: Like, “Go faster!” you know, and stuff like that.
Mom: Most of the kids, I was really surprised though. The kids, they all want to push her wheelchair; they all want to help her. And I always think the kids are going to be mean. But Caitlin, I think she’s just very social and she has a lot of friends, and they just love her. It’s not been a problem, has it? Because I mean, I was always concerned that it was going to be.
Caitlin: Sometimes, but not as much.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
Adults can be just as ignorant as kids
I feel like I got very fortunate because I honestly didn’t have many problems with teasing. I had the same group of friends for a really long time and they never made fun of me or made me feel bad about it. When I was in school I never really wore stuff that was very revealing, even as a younger kid, so there wasn’t a whole lot of problems with teasing. But when I would go on vacation, I’d be in a bathing suit or something like that, sometimes believe it or not adults can be just as ignorant as kids. I’d have times where adults would approach me and literally tap me on the shoulder and be like “What’s wrong with your leg?” That’s happened to me several times, so as a little kid that’s a little bit hard to deal with because you start to experience this feeling where you almost feel like people are always staring at you if you aren’t covered up completely. I think that makes it a little bit harder to come out of your shell as you grow older, but as far as teasing and being made fun of, I never really had problems with that as far as kids my own age group, so I feel like I was fortunate as far as that.
Erica, young adult, Klippel-Trenaunay syndrome
In a lot of ways I grew up faster because of it
I would say throughout all of it, high school was definitely when it started to become hard. The thing too about having a rare condition is that it’s not that easy to explain to people who aren’t aware of it. Klippel-Trenaunay syndrome is not something that masses of people are familiar with, so it’s like how do you tell someone, how do you bring that up in a casual conversation with a friend? That’s something I struggled with, not being in school a lot… Academically I was really focused and determined and I worked with tutors to make sure I was caught up and made good grades, but socially, it definitely impacted me more. I was kind of just adjusting to this lifestyle as a young adult and it was hard for me to open up to others. So I would say the high school years were definitely the hardest, because also you have people that don’t understand. Even if they know you have something wrong with you, they might tease you about being absent so much and stuff like that. I would say it is hard when people are ignorant of the situation, but at the same time, I just tried to place myself in the shoes, like, “Well, if I didn’t have this.” I think in a lot of ways I grew up faster because of it, so I couldn’t always expect people to be on the same level as I am, as far as like understanding the medical stuff.
Erica, young adult, Klippel-Trenaunay syndrome
The way I dealt with it was by walking away
I did get teased at school because of looking different and talking different, but I never really let it get to me. Yeah, I would get upset and sad, but then I’d move on. No matter what you look or act like, somebody is going to find a reason to make fun of you or have something negative to say. I’m just glad that I don’t surround myself with those types of people. I’m also glad that I’m not one of those people. They must be very insecure with themselves if they have to find a reason to pick on others. The way I dealt with it was by walking away. If it was something that kept occurring I would talk to a teacher or my nurse about it and let them deal with the student. I learned early on to pick my battles.
Emily, adult, Lymphatic malformation
Kids can be cruel
It was hard for me in school, obviously because kids can be cruel and there were people who were cruel and would make fun of me. Especially when I was younger, once the lump on my neck had grown to a certain amount, you could see it, it was noticeable, and there was obviously something wrong with me. And I listened to everything from, do you have mumps to do you have cancer, being called names, people not wanting to play with me, and that was hard… No one else in my family has this. My mom was like, “no we asked the doctors, it’s not something you can get. The kids can’t get it from her playing with her.” But it took years, I would say 2-3 years for some of them to come around and realize that their kids were not going to get anything from me. They weren’t going to get these lumps or whatever. So that was hard.
Lucy, adult, Blue rubber bleb nevus syndrome
It wasn’t as big of a deal
I grew up in a small suburb, so everyone kind of knew everyone, which was a good thing for the most part because my friends all knew about it and it wasn’t as big of a deal … I had a few close friends that were in my classes, and once people knew, they didn’t really talk to me about it. It was sort of unspoken, that’s just the way it is I think as a child… There was no issue with bullying—maybe I was lucky, I don’t know—but there was only one incident and I very specifically remember my friends standing around me and defending me. Sometimes those negative things stick out more because they don’t happen very often, but for the most part I think I was fortunate to have the friends that I did.
Katherine, adult, Venous malformation