Everyone wants to feel special, right? Not necessarily. Many young people with serious or chronic illnesses talk about just wanting to feel normal. But it’s hard to feel normal when you’re bald from chemotherapy or everyone is staring at you as you roll past in a wheelchair. It’s hard to feel normal when you don’t look normal. And even if your condition isn’t always obvious on the outside, illness can limit teens from doing normal things like going to school or participating in activities.
Technology offers an exciting opportunity for chronically ill young people to act and be seen as normal. For one thing, no one has to know what you look like on the other side of the screen. And as long as the hospital’s WiFi is decent, you can interact online even from the “comfort” of the robotic bed in your room. (For conditions that make a standard computer or controller difficult, check out last week’s blog post on assistive technologies.)
A University of Washington study describes two ways that young cancer patients use technology to feel normal – maintaining normalcy and creating a new normal. The study starts by describing the challenge, asking these young cancer patients what obstacles they saw to feeling normal. The most common answers were struggling with health aspects, fitting in, missing out, feeling rejected, and lacking control. To fight against these obstacles, teens used technology to maintain normalcy in the following ways: Staying connected, feeling present without being present, normal conversation topics, and validating feelings.
That said, not all teens in this study created the feeling of normalcy by holding on to who they were before illness; some used technology to create a “new normal.” They did this through connecting with peer patients, educating healthy peers, and using technology to manage reactions. For example, the study tells the story of a 15-year-old osteosarcoma patient named Lucy who would rush home after treatments to put on her wig and makeup – “she wanted the world to still see her as her,” her mother says. Eventually, over time, Lucy started experimenting with posting photos of herself to Facebook wearing less and less makeup. According to the study, this allowed Lucy to help her community understand and come to terms with what she looked like after treatment.
Other ill teens use technology to mask their disease entirely, for example by playing as avatars in virtual worlds. The important part is that playing in this way isn’t special or unusual or weird. In worldbuilding games like Minecraft or Second Life, and in real-time cooperative games like Fortnite and World of Warcraft, everyone is someone else. These games offer the opportunity for ill teens to be perfectly normal…maybe even to the very normal point that their parents have to yell at them about too much screen time.
In other words, technology helps ill teens take control of how they are seen. If a teen wants to disclose their condition, perhaps to seek support, that is his or her choice. On the other hand, if a teen wants to just be a teen, technology offers all the opportunity in the (virtual) world to just hang out, interact, and maybe fight a monster or two.
Dr. Pikiewicz earned her PhD in Clinical Psychology at Pacifica Graduate Institute in Carpinteria, CA. She completed pre-doctoral training at the Nan Tolbert Nurturing Center in Ojai, CA, and her post-doctoral internship at the Boulder Institute for Psychotherapy and Research. At both sites, Dr. Pikiewicz worked with a range of adult, adolescent and child clients in individual, couple, family and group settings. She also holds a B.S. in environmental science from Allegheny College and a teaching credential from Western Washington University.
