I came home with visiting nurses who would come in and do the caths, and then they began teaching my mother how to do it. Because I am prone to infection, they wanted it done sterilely, so they had my mom do it.
It did affect our relationship at the time. It was embarrassing for the both of us because I am a teenager and I just wouldn’t be having my mom look at me in that way, but she had to. So it was sort of embarrassing.
Jenna, age 16
A very honest relationship
I have a very, very, very honest relationship with my parents, and they even think I’m too honest with them in a sense that I’ll share everything with them. And I’ll talk about my health with them. But sometimes my dad is a very honest person, so he’ll say whatever is on his mind, whether he means it or not. Sometimes he can be like, you know, “I’m so tired of having to go to the hospital every day.” Then it’s like, “Oh, I’m sorry, I feel bad!” But we’re very honest, and they say, “You know it doesn’t have to be this way.” Like, I’ll go through periods where I’ll go to the hospital more because I’m not taking good enough care of myself, and that’s my fault and I know it and they make it clear to me.
Elizabeth, age 16
Fights with my parents
Everything revolves around my medical condition rather than around me sometimes. Not that I want everything to revolve around me, but I feel like it’s not like, “Oh, what would Elizabeth want to do?” it’s “Oh, what can Elizabeth do, provided her situation?” It’s definitely inhibited me, and to be honest, all the fights that I can think of with my parents definitely involved something having to do with my medical condition. Like my dad will be like, “Do you know how hard it’s been, having to go to the hospital every week for you? Now I can’t hold a steady job.” Blah blah blah. Or like, “You can’t go to college far away, you need to be close to this hospital where the doctors know you and understand your situation!”
I feel like they clearly just care about me and are concerned about me, so I’m flattered, but at the same time it’s really annoying. Like I’ll say, “Oh, I want to do this camp.” They’ll be like “Okay, that’s great, but what about your medical condition?”
Elizabeth, age 16
I think having health problems kept me and my mom close. Cause she was always the one that more always understood my health problems and me at the same time. She was always the one that was there and understood me more than anybody.
Isaiah, age 17
They do the best they can for me
My cousin is exactly three years and one month apart from me, and we’ve been very close since we were little. We use to talk on the phone a lot when I was, like, nine. We talk every week, we text, we go on Facebook, we try to talk as much as possible.
And the last time I went to Boston in April, when they told me foot surgery might be an option, I completely cried on my way home, and I called her right away and sat on the phone with her for two hours and she was very reassuring. She’s very knowing and calms me down and says, “You know, look at it another way.” And it’s easier to talk about stuff because we always have – we’ve always talked about this stuff, and she is there whenever I need her…She’s very helpful, and my brothers and sisters are very supportive too. My sister actually became a physical therapist because of what happened to me. She’s very understanding too and she helps my mom figure out stuff. My family is very supportive and they do the best they can for me.
Kayla, age 14
I’m going to be frustrated at times
One thing that always used to bother me was when parents would always say, “How are you feeling?” Well, how do you think I’m feeling? That question always really bothered me, so I guess they need to be understanding that the patient’s going to be frustrated at times. I know that when I have the bladder spasms, I’m not fun to be around, not so much because I’m in pain but because I’m nervous – “Why am I having these spasms? Why do I have a pain in my bladder? I don’t remember doing anything that would bring this on…” When you have a doctor like mine, I can say, “Geez, this is really freaking me out. What do you think this is?” And he says, “It’s X, Y, and Z,” or “It could be this, why don’t you get this test?” Now the nerves are gone, and I’m a little bit happier, you know? So I think that’s a tough thing for parents and for patients, understanding that people are going to get in some upset moods once in a while.
Sam, age 32