It’s not the first thing I’ll do when I meet someone
[Because] I’ve had so many of the same friends since the 1st grade, I’ve never really had to explain to them because they’ve known me throughout everything. Now when I’m just meeting someone, first day in college or something like that and they ask you to go to the mall or something like that, it’s like how do you explain that you can’t go because you have this really rare condition that you were born with? It’s not a typical condition or chronic illness, it’s very unheard of, so to be honest, it’s something I still struggle with.
But I find that if you’re honest with the person and they’re really your friend, they totally understand and they just want what’s best for you. Like, it’s not the first thing I’ll do when I meet someone. I’m not like “hi I’m Erica, I have Klippel-Trenaunay syndrome” but when situations like that do arise, like do you want to go to the mall, do you want to go take a walk, it can’t hurt to be honest, that’s my experience with it. I find that that’s better than just making an excuse like I can’t go because I’m busy that day, or something like that, because eventually it will catch up to you. If the person’s really your friend, be upfront with them.
Erica, young adult, Klippel-Trenaunay syndrome
It almost helps filter out who your true friends are
I would say that I think it almost helps filter out who your true friends are. Because my true friends, they never were embarrassed to go to the beach with me when I was in a bathing suit, because of my birth mark or anything like that, they were always just there for me. They never made fun of me or made me feel bad about my condition. Your true friends will care about the person you are underneath, and not the superficial stuff. So it definitely helped me find my true friends, and in some cases, not my true friends. I think having a really tight knit team of people you can rely on and depend on and go to when things aren’t going so great, just talk about your feelings with, I think that’s really important.
Erica, young adult, Klippel-Trenaunay syndrome
When I’m sick it kind of takes the forefront
I would say my health comes up every so often with my friends, it’s very dependent on the time that it’s happening. When my health is good, it’s rarely a topic of conversation because we’re talking about other things. When I’m sick it kind of takes the forefront. With pretty much everybody in the last couple months, professors, physicians, friends, my boyfriend, health has been a main topic because I still have a drain in, I just got my PICC pulled today, very exciting! But I’ve been sick now for a couple of months, and I feel like it starts becoming a topic in social circles when it starts affecting you socially. As long as I’m healthy and I can go out and I can see people, it’s really not an issue, but when I was sick I missed my friend’s baby shower so we’ve had several conversations about well how are you feeling, I still need to get you your baby gift. Then it becomes a little more present.
Sarah, young adult, Klippel-Trenaunay syndrome
Deciding what friends to talk to
I kind of just feel people out, and it’s a combination of I need to feel comfortable sharing this information with a person and they need to be comfortable too. There are some friends that are squeamish so there are things that I don’t share with them because I know it just makes them uncomfortable. Similarly, there are some of my friends that I feel are more interested in the going out, gossiping, not really talking on a deeper level.
Some of it just happens by chance; when I was in my senior year of high school I had a bleeding episode in the school that was a mess, and there were a couple of my friends that were really there for me and cool about it, and handled it in a respectable but appropriate manner, and there were some of my friends that didn’t know how to handle it at all. Going forward from that, the ones who I knew it didn’t bother, they understood what was going on, those were kind of the ones from then on that I would share stuff with.
Sarah, young adult, Klippel-Trenaunay syndrome
I was just careful with who I told
There are a couple of friends that I’ve been close to that I’ve known for about 10 years and they know, but not too many. When I was at school, I didn’t want to be known and walk around and, “Oh, Lena, she’s sick and she’s this and that.” But sometimes, some of my friends, they knew about it. I was just careful with who I told… [I would tell people] if I felt comfortable, if I felt that I trusted them, that they would be understanding as well, that they cared for me. It definitely wasn’t easy… When I was 12 years old and flew up, they knew some of it, but now, I mean my friends forget that I’m even sick. Just, normal talk, I mean, there’s not much to share just because I’m not in treatment right now, I am healthy at this point and so they don’t feel the need to ask too much.
Lena, young adult, Kaposiform lymphangiomatosis
They never made me feel like I had something wrong with me
I stayed really close with my friends, I have a great great group of close friends and they encouraged me to come out with them for pizza or whatever. They always would make me laugh about something, they always made me feel really comfortable, and they never made me feel awkward. They never made me feel like I had something wrong with me, they just treated me like they always had. I had always played sports with them; they were all just as active as me and they didn’t treat me any different, I was still just one of them and I think that’s what helped me the most, was being around my friends.
Kevin, young adult, Gorham’s disease
Without them, I would not be who I am today
I have been so lucky and grateful to have a small group of amazing friends. Most of my friends I have had since I was in kindergarten. A few of them I have met since graduating high school. They are positive, out-going friends who have a great sense of humor and know how to pick me up when I’m feeling down. I know that if I needed help with anything they would always have my back and be there for me. Without them, I would not be who I am today.
Emily, adult, Lymphatic malformation
They were like my family
Some of my closest friends that I was making in college, after a while I would tell them. I was a bio major, premed, so of course most of my friends were going to become doctors. To them, this was so interesting, like “oh, I’m going to become a pediatrician, what if I have a kid that has this?” So then I felt like, ok this is an educational opportunity now. For people who are closer, and I could have an open discussion, I would talk more in detail about what my doctors were telling me, things that worked, things that didn’t work, things like that. My closest friends knew, I tried to explain what it was, but some of them when they would try to explain it to somebody else, they would be like, “What is that again? It’s a spongy thing.” Like oh my God, you are in my premed class and you can’t explain this. It’s abnormal veins that grow out from the good veins, and they couldn’t get it; they would still come up with the sponge thing anyway. But I have friends who were criminal justice majors, sociology majors and they just kind of accept it, they knew, like if you don’t feel good we will help you. They were like my family, it was nothing like what I went through in elementary school or high school as far as feeling isolated or being picked on or anything.
Lucy, adult, Blue rubber bleb nevus syndrome