The Experience Journals were created to promote healthy coping strategies for children, teens and families facing adversity and chronic illness. They were founded by Drs. David DeMaso and Joseph Gonzalez-Heydrich of the Boston Children’s Hospital Department of Psychiatry, and are a collection of stories and experiences from patients and families about what it has been like to live with a significant physical and/or emotional condition.
These stories represent the collective wisdom of children, teens, parents and health care providers. Here are some of their stories, in their own words.
Advice from children and teens: Living with chronic illness
Lucy, Vascular Anomalies
You can’t let other people define who you are …
Sometimes it might be something you can work out with somebody, but you just have to have better coping skills and be the person to step forward and say, “I am this way, I can’t help that this happened to me,” and explain your story. Some people open up and reach out to you and the people who don’t, you have to say it’s their loss, because everybody is special, everybody has a gift.
I go to my mom. My mom’s a big person. And then I have a friend that has been with me throughout; we’ve been friends for a really, really long time. I talk to her if I’m stressed, or if I want to vent about something, like, “Oh, I hate having to drink all this water all the time!”
Youth, Facing Violence
When I get upset, I have locations where I go and just sit down and relax. I go for a drive, and then I just sit in the sand and relax. It’s pretty much sitting by myself thinking about what exactly made me mad and why. I usually sit in my car and I start working on it, modifying it.
Child, Irritable Bowel Disease (IBD)
It’s important not to get stressed out. Stress aggravates IBD a little bit, and it doesn’t help, so it is important not to get too stressed out about things like school or the SATs. I try to keep everyday stresses in the back of my mind. Make sure you’re not pushing yourself too hard.
Always remember you are what you are, you control your own destiny, no one else. You’re strong because you’re living, no matter what happened along the way, or what story your life may tell, battling life, living life itself, sacrificing, loving … hating; it’s strength all its own. As long as you wake up each day, you’ve proclaimed inner strength.
It was hard because I used to do two to eight shots a day. If I ate something, it would’ve been more. I got used to them, but I kind of didn’t like them. I had this little stuffed animal dog, and I used to take him and squeeze him when I got shots.
At one of the check-ups, we met this other kid who lives near us and we talked and they were thinking about using catheters and he wasn’t really sure, so since I was already using them, I said that I’d talk about it. I said some things about it — that it doesn’t hurt at all, and it’s easy, and that you should because it helps. And a few months later we got together again … and it turned out he was using catheters and was OK with them. I’m happy it worked, and well, I kind of liked talking to somebody else who kind of has the same issue as me!
Advice from Caregivers: Helping my child cope with a chronic illness
Parent, Facing Violence
I had a supportive community. I had people who allowed me to cry, to scream, to tell my story over and over, to have my pity parties, to rage, to do everything that wasn’t pretty. But in the end they didn’t let me stay there.
Parent, Cerebral Palsy
I try and help him to feel loved and I give him the tools to deal with life in a difficult world. He knows when he falls, he needs to simply get up — no “poor me.” That’s life.
I would just tell her to pray all the time. She’d say to me, “I am, I did, I am!” I would be like, “That’s all we can do.” So faith definitely plays a big part.
Parent, Hearing Loss
I remember feeling something was wrong and this can’t be right. I think it was all at once. How can that be? Why? What is it? A question that keeps coming up is “Why?” I can’t figure out how this happened. All three of them have it and it’s oh well, we’re lucky to have what we have and we just deal with it. In the long run it’s not that big of a deal. First it was disbelief, then it was questioning why it all happened, but then you come to this is what it is and you just deal with it.
I used to say grief is like a tunnel and when you get to the end of the tunnel, you’re done. But you’re not. When you get to the end of the tunnel, you’ve gotten to a point where you can accept what has gone on. It’s not like the beginning of the grief is at the other end of the tunnel, and now you’re so much further away from it and you’re great. That’s not necessarily what it means, but you’ve made it through. It is dark and it’s scary, and it will literally knock you to your knees, but you will get up. You have to. There’s no other choice. I guess that’s the beauty of human nature.
Learn more coping strategies from Experience Journal.