Dr Sue Towns (adolescent physician): Living with a chronic illness during the adolescent years can have significant impact. In the early adolescent years, 12, 13, 14, it’s around all the changes of body image and coming to terms with the physical changes of puberty.
Kate (mother of 3, 1 with a chronic condition): When she hit puberty, she ended up with a bowel that started to stop just when it wanted to, so she felt very embarrassed walking around as a year 7 girl looking like she was 9 months pregnant and not being able to do the zipper up on her school skirt.
Marlene (mother of 2, 1 with a chronic condition): Adolescence has been a challenge. Scott would say more for me than for him. He’s dealing with everything that goes with a spinal cord injury as well as all the other normal adolescent things as well as everything that was going on at school being in high school.
Dr Sue Towns: During the middle years, the focus for growing up is around peer interaction and wanting to be part of the peer group, wanting to be normal, and having a chronic illness really makes you feel different. Or can make you feel different. You’re having to take medication. You’re having to come to hospital visits. You’re having to see doctors, you’re having to spend time in hospital when really, you just want to be at school, you want to be with your friends, you want to be going out and doing the normal things.
Rosie (17, living with a chronic condition): Living with a long term chronic condition and being a teenager is sort of 2 opposites. Going out with friends is hard, it would be a rare treat. And some of my friends are ok with that, and others… You know, sort of get annoyed.
Samira (mother of 5, 2 with a chronic condition): They don’t want to tell their friends. They don’t want to show that – you know, at a certain time, they were both on growth hormones and they had to have this injection each night at a certain time. They didn’t want to bring that out in front of everybody. If we were at a dinner or people over. They didn’t want to do it. They wanted to brush it under the carpet and wait until everybody left. And that just doesn’t work like that.
Kate: She basically didn’t do any school lessons between halfway through year 7 and the end of year 10. It’s meant missing out on a lot of the normal socialising, whatever is normal for teenagers. And a lot of what people would see as regular independent steps through the teenage years.
Mae (22, living with a chronic condition): You’re trying to figure out who you are, what you want to do in life, and there’s just always something there that’s always pushing against you. Your friends don’t quite understand it, and you disappear for days or weeks at a time, just because you’ve been in hospital. And you come back to school and you just don’t know what’s happened for the last – a lot can happen in 2 weeks of a teenage life, I guess.
Katie Wagner (coordinator, peer support group for teens with chronic conditions): It’s a big time for them to kind of have a lot off school, and maybe not have those consistent friendships that other teenagers might.
Kate: She hasn’t had the school friendships as tight. But she has had the hospital friends. And we foster and encourage those as much as we can. But we also have to be mindful of Rosie’s own health. So we do things that are health appropriate. We’ll talk about the medical side of things, because there’s ileostomy, there’s tube feeds, there’s medications, there’s facial paralysis, there’s cutting up of food, there’s medical issues.
So we talk about that at other times. So that it’s not talked about as these are the hindrances from getting you out, know – yes, you can do this you go on and do this and enjoy it, and we talk about it at other times, so that she’s got in her armoury, how she’s going to handle her medical stuff when she is out. So when she is out, it’s not an issue.
Dr Sue Towns: We would encourage parents to try to find a way for the young person to go to school camp, to find a way to do social activities, to find a way to manage, to do as much as the normal activities as possible. So that they’re able to achieve the goals of adolescence, as well as manage their chronic illness optimally.
If a young person starts to be really distressed, with acting out behaviours, with social withdrawal or social isolation, missing school, these are red flags to parents to say there’s something more seriously wrong, and that we need to get some help.
Marlene: We found counselling was invaluable. Scott got counselling himself as a teenager which was something he’d never had when he was younger, and we never really thought that he needed, it was something that he didn’t want and didn’t need earlier on, although it was offered. As a teenager he got to the point where he needed it.
Dr Sue Towns: Well, there are actually many services available for adolescence and for families to get help. There are the specialist adolescence services. But there are also community and adolescence mental health services. GPs who specialize in adolescents, psychologists who specialize in adolescents, and of course, you want to put together a package of interventions that are going to actually target and support the young person and their family’s needs.
Katie Wagner: A lot of patients, especially with chronic illnesses that have had a lot of hospitalizations, I think they sometimes over identify with their illness. So it’s important to really try and help them put it in perspective, and help them to become independent, and realize that there is a whole world out there that they can conquer, so being encouraging in that way and being that support network behind them is really important.
Kate: I’m her advocate. Because she has got medical issues, I’m still very much her parent, but as she’s a teenager, we’re becoming more friends. But I still hold the mum card, absolutely. The other good thing is that as she’s getting older, we don’t have to sort of simplify or maybe dumb down medical issues. We talk sort of almost adult to adult. There’s no secrets and she understands fully what is happening in each of her medical situations. And that’s been really good because you can’t put any wool over a teenager’s eyes. There’s no point trying to keep things secret and less than truthful.