By Trudie Mitschang
The teenage years are tough. Even healthy, well-adjusted kids struggle with the challenges of peer pressure, family relationships and simply fitting in. But for a teen living with chronic illness, these issues are compounded; loss of energy, endless doctor appointments, time-consuming medical treatments, missed activities, and feelings of isolation make normal teen angst pale by comparison. Fourteen-year-old Arianna Kazemi understands. Arianna lives with primary immune deficiency disease (PIDD) and juggles the need for regular IVIG infusions with the demands of adolescence.
“It’s challenging because not everyone understands,” she says. “It makes me feel like I’m different from everyone else and I feel like I miss out on a lot of things when I’m tired, sick or in the clinic for an infusion.”
Teens living with chronic illness may also be embarrassed to tell friends about their illness for fear of being ridiculed or bullied, making meaningful relationships difficult. For older teens, there is also the challenge of learning to manage their care on their own. Kids diagnosed with a chronic illness when they are young may be used to having their parents as caregivers. As they mature and become more independent, they will begin transitioning from pediatric to adult medical care, and this transition can be tough on both teens and parents, who may not be ready to trust their child with things like scheduling exams and dealing with healthcare providers.
Of course, these are just some of the issues facing teens and their families within the IG community. At IG Living, our mission is to support our readers through education, communication and advocacy, and one of the ways we’ve been able to do this is through our online presence. Our website and Facebook page provide a place for readers to connect and support one another, while accessing helpful resources to ease the challenges of living with chronic disease.
In the coming weeks, we will be adding an IG Living Teen Group (IGL Teen) to our Facebook page and a Teen tab to our website, to support our younger readers. The Facebook group will be an invitation-only forum where teens can discuss whatever issues they are facing. Unlike public Facebook pages and news feeds, groups are more private and provide a safe place for kids to “get real” about living with chronic illness. “I love the idea of an online group because it would be a place where I could connect and share with other teens like me,” says Arianna. “Other teens who have a chronic illness just get it; I don’t have to explain. We could support each other.”
On IGLiving.com, our teen page will house everything from helpful links to online resources and reader-submitted blogs to book reviews, Q & As and much more.
Are you a teen living with chronic illness? We’d love to hear from you! What online features and resources would you find helpful? We’re also looking for teens to write blogs and columns, so if you are a budding writer, shoot us an email (firstname.lastname@example.org) and we’ll send you our writer’s guidelines.
Living with immune disease as a teen can feel overwhelming, but at IG Living we’re tackling the issues head on. Looking forward to seeing you online!