It’s so different for everyone
That’s what’s so hard sometimes. You want to answer back parents or even younger kids and be like “I went through this and it wasn’t so bad so it’s going to be like that for you too” but you can’t do that. You can tell them what it was like in your experience, from your eyes, but there’s no definitive answers. I think that’s kind of one of the scariest things about having something like this is it’s so different for everyone, there’s no definitive answers as far as what age your child is going to socially progress at, and stuff like that, it’s different for everyone…
A lot of people worry, they say “Are my kids going to have friends? I’m worried about them dating when they’re older. Are they going to have a boyfriend or girlfriend?” My experience has all been positive with that stuff so I tell them that if someone really likes you or they really want to be your friend they’re not going to care what your appearance is, they really don’t. If someone is attracted to your personality, the medical stuff, they just want to be there for you through that.
Erica, young adult, Klippel-Trenaunay syndrome
He’s just so accepting
I met somebody and he’s just so accepting. When I first had to tell him, he was afraid I had to say something else like I like girls or something, he was so scared. I told him that I was sick and he said, “Oh, well that’s not a big deal, I don’t really care.” So it was quite a shock to me, and it was nice. I’ve been very lucky to have someone like him who accepts me and doesn’t see me as being sick. But still, I can’t help but think, “What if things don’t work out?” I probably would have to go through the same thing again, so that still remains, being afraid of telling somebody, confessing that to somebody, to a guy, how are they going to take it? But for now, I’m in a long-term relationship and I’m happy.
Lena, young adult, Kaposiform lymphangiomatosis
He has come a long way
When I met my husband I tried to sit him down, when we were more serious and talking about commitment and all of that. I just said, “I want you to know up front, I have this rare condition, there are 150 people that have it in the whole world and it could be life threatening. I could bleed internally, it just happened, I had these problems.” He saw the lump and he saw past it. He said, “I wondered what it was, but I just figured it was a sensitive subject and if you wanted to tell me, you would when you were ready to tell me.”
So he’s fine, he has come a long way. He has read through those binders. He remembers stuff that I don’t even remember happening. But I just explained it to him, they are these little blood blisters and if I pop the ones on my skin they can bleed, now I am on a blood thinner, I have special stuff I have to put on, if it doesn’t stop bleeding within 40 minutes I have to go to the hospital and get lasered or stitched. So it has been a handful I think, but he is more patient than I could ever even hope for.
Lucy, adult, Blue rubber bleb nevus syndrome