Katie Wagner (coordinator, peer support group for teens with chronic conditions): I think it’s really important for parents to seek out support groups for their adolescents, because it’s great to have family support. It’s very, very important. However, they still need someone that’s their own age that has actually gone through the things that they are going through to be able to talk to them and have that extra support there, that their school friends might not be able to give them.
Rosie (17, living with a chronic condition): A lot of teenagers have like the common ground of being in high school and having boyfriends or girlfriends or, you know, going to parties. But people with chronic conditions don’t have that coming around, it’s a struggle to get to school, they don’t have time for relationships and it’s – so finding sort of one that is in a similar position. We can support and motivate each other to keep trying and persevering.
Kate (mother of 3, 1 with a chronic condition): One of the brilliant things that she’s discovered is Livewire, which is a chat room hosted by the Starlight Foundation. And they’re – because she doesn’t necessarily get the same socialising with peers at school, these kids that she’s socialising with on Livewire are all like hospital minded.
Rosie: Online communities for teenagers are really good because you don’t have to talk like face to face, you can be typing which is sort of a natural position, natural thing for teenagers to do.
Katie Wagner: If you’re looking for a support group in your area, it’s a great point to start at is talking to your medical team at your treating hospital. And talking to a social worker and seeing if they’re aware of anything. If that fails, hop on the internet, type it into Google, and I’m sure there will be something come up. There’s a lot more out there than you first think. So there are a lot of people going through the same issues that may be able to help you.
Mae (22, living with a chronic condition): I was fortunate enough to be a part of a peer support group. It has been extremely helpful, it’s a bunch of kids with a chronic illness. We all don’t have the same illness. But it’s pretty much the same. A cannula to one person is still a cannula to another person or doctors and nurses, they all pretty much treat each patient the same despite your illness. And just knowing that you’re not alone and that you can get through it and seeing other people’s challenges and how they face them and how they deal with it, get into probe what other people do is very helpful.
Marlene (mother of 2, 1 with a chronic condition): Scott’s involved in the peer support which is run down at the adolescent medicine group in the kids hospital. And it’s chronic illness peer support. And he has a disability but lots of the kids have – they have all sorts of chronic illnesses, not necessarily disabilities. But it’s just been a lifeline for it, he just loves it, because all of the kids there, or the young adults, they just understand each other. And he says that they understand him more than perhaps I understand him as a parent. Because they are all – even though they are all going through different things, they all have a lot in common.
He has also learnt from that when he was having a lot of anxiety. He’s learnt that that is very normal. And he’s just like everybody else and he knows that he can deal with it, and he knows that he will get through it. So he does social things with that group but it’s also a lot of support.
Katie Wagner: So we do stuff like getting out around the city, we go the aquarium, we go to the I-max theatre. We do a lot of things in and outside of the hospital. And then we have an end of year camp, which is 3 days of canoeing and rock climbing and everything as well as team building activities. It really helps them to expand the support network throughout the program. And also to form very strong friendship bonds.