Missing out on “normal”: Advice from an expert on how to help kids with serious illnesses


When I first met Erica Medina in 2012, she was already practiced at living in two worlds. Then 17, she loved the ordinary teenage realm of high school classes, basketball and volleyball games, and trips to the mall with her friends. But since her diagnosis with juvenile idiopathic arthritis at age 11, she had also spent a lot of time in the medical world, where she and her doctors struggled to manage the pain caused by a disease that has no cure.

The story I wrote about Erica explained how the two worlds sometimes collided:

Back pain made it taxing to sit through school lectures, go on field trips or walk through the mall with friends. It wasn’t just the pain that bothered her: “When I was younger I hated taking my meds,” Erica said, adding that it felt like “giving up” to take pain medicine.

Although juvenile idiopathic arthritis is fairly rare, Erica’s longing for normalcy is not. Children and teenagers with all kinds of chronic and serious conditions have the same desire, says pediatric psychologist Barbara Sourkes, PhD, who directs the palliative care program at Lucile Packard Children’s Hospital Stanford.

A big part of Sourkes’ role is to help children, teenagers and their families navigate the divide between living with a difficult diagnosis and simply being a kid. She’s summarized her insights about this in a thoughtful piece on the blog for Digging Deep, a publication designed to help kids facing health challenges. Young people like Erica “commute” between the normal and medical worlds, “an extraordinary challenge,” Sourkes says. From her piece, here is some of her advice for families and others on how to help:

Be aware and sensitive to the importance of feeling “normal” – as normal as possible – for all children and adolescents living with illness. While we typically focus more on adolescents’ desire to “fit in,” even very young children are sensitive to being “different.” Help them focus on and remember what aspects of their lives – and of themselves – are still the same despite the illness.

Today, at age 21, Erica is ten years past her initial diagnosis. She’s dealing again with her arthritis after a three-year remission that she said was “wonderful, a ball.” Although the feeling of normalcy comes more readily now, she distinctly remembers how hard it was to strike the right balance as a kid.

“At first, I didn’t know the extent of my illness,” Erica said. “I needed my mom for that, to help figure out how far I could go.” Her parents sought to acknowledge her limits without dwelling on them. When her arthritis flared, they focused on what she could do instead of what she couldn’t — swimming for exercise instead of walking, for instance. “Open communication with my parents gave me a better understanding of how I was going to live my normal life,” she said.

Even more important, her family provided emotional support no matter what. “There were times I was very upset,” Erica said. “The thing I appreciated was how open my parents were about listening to me and letting me deal with it.”

Via Scope

Photo of Erica Medina (right) and her mom, Stephanie Medina, in 2012 by Erin Digitale

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