Asthma is the most common chronic medical condition in the U.S., affecting nearly 10 percent of the population. The rate can be even higher in children; some Boston public schools report rates as high as 16 percent among students.
Children growing up with asthma often face difficulty breathing, and they may feel isolated from their peers. While this condition can be disruptive to a child’s life, it can be well controlled with proper medical care.
The Asthma Experience Journal, created by the Boston Children’s Hospital Department of Psychiatry and the Allergy and Asthma Program, includes stories and personal experiences that represent the collective wisdom of children, young adults and families living with pediatric asthma. In this Journal, patients and families were interviewed about their experiences with asthma from dealing with medication to coping with physical and emotional challenges. Here are some of their stories in their own words.
Patient perspectives on having asthma
It’s OK to have asthma
It’s OK to have asthma because I have asthma, too, and you can play with me. I can play with you in your house, or you can play with me in my house. I can show you how to take your medicines, and I’ll show you how I take my medicine.
— Allison, 9
I can still play around and be silly
Even though I have asthma I can still play around and be silly. When I take my medicine, it makes me feel better. It makes me feel like a regular kid.
I am still a regular kid, but I have asthma. And the medicine helps me so I am not afraid to play outside.
— Jared, 10
I saw asthma as something that made me unique
I was never embarrassed by having asthma; I always saw it as something that made me unique. As I’ve grown up, I don’t get asthma attacks as much. Also, I’m more prepared mentally — I make sure everyone around me knows I have asthma, and I always have my inhaler with me.
— Allie, 18
It’s the little things that make it hard
It’s the little things that are hard about having asthma and being around friends. Like having to stop three times to sit down on a walk from your dorm to the train because you cannot breathe. Or asking your peers not to smoke around you because you won’t be able to breathe. Not being able to laugh with your friends because you won’t be able to breathe …. small things that, you really feel in a big way.
— Michelle, 22
Parent perspectives on childhood asthma
You can’t forget
I read a lot about asthma, but it was really getting to know my son and his asthma that made me learn whether or not he needs an increase or a decrease in his meds. You actually get to know what your child needs for medication, and if you forget a dose you can actually see it in your child. If I forget after a few days (and because I am a very busy mother I do forget sometimes that he does need his morning Flovent) I really see symptoms of asthma coming right back, and he gets ill. So I don’t forget. You can’t forget.
— A parent
She’s very active
Lucy acts, she wants to do dance, she asks to do soccer. She’s very active — I mean she’s not one of the kids who will sit there and watch everybody; she’s out there running around with them. I don’t hold her back from doing anything either. I just let her do it — I’m not going to make her asthma a handicap for her.
— A parent
Appreciate the beauty
You can appreciate the beauty of a day with no breathing problems and no illness. It’s nice to be able to appreciate that. I mean, you don’t know when you have it good until you’ve seen it bad. I’d say that’s the greatest joy.
— A parent
Learn more about living with asthma and other chronic conditions from Experience Journal.