You Are Bigger Than Your Disease

Starting kindergarten is an exciting and stressful transition for any child. For Ethan Roberts, the stress was amplified by the fact that he was diagnosed with Crohn's disease just before school began.

Crohn's inflames the lining of the gastrointestinal tract, causing abdominal pain, fatigue, frequent diarrhea, and severely reducing the body's ability to take in nutrients. Treatment involves drastic changes to the diet and time-consuming intravenous infusions of medications that cause more fatigue.

Although Ethan did OK at school, once safely home he would lash out at his parents in angry outbursts that seemed uncharacteristic. "We took Ethan to see two different psychiatrists, but they were like deer in the headlights," says Ethan's dad, Jeff Roberts. "They just didn't get Crohn's."

Enter Dr. Carin Cunningham, a psychologist who specializes in treating kids with gastrointestinal diseases like Crohn's. She knows the emotional and psychological toll that dealing with an intense, persistent illness can have on kids - even when they don't have an underlying mental illness. That's why Seattle Children's is beginning to include psychologists as part of clinical teams for chronic conditions like Crohn's and life-threatening diseases like cancer.

Ethan and his parents began seeing Cunningham several times a month. "We knew the minute we sat down with her that she understood Crohn's," Roberts says. "Her knowledge helped lift the weight off our shoulders. She's able to treat the emotional and mental side of it - for him, and us."

Cunningham literally "wrote the book" on this topic; she's the author of a comprehensive resource on the biopsychosocial aspects of gastrointestinal disorders in kids.

"It's so hard to be a kid and go through this," says Cunningham. "My goal is to help patients like Ethan deal with their illness so that it has the least impact on their development as a person, and also to help parents support their children. Most kids with Crohn's just want to be kids and live their normal lives. My role is to help them do just that."

Having a pediatric psychologist "embedded" in the care team means that both physicians and families have access to psychological resources right in clinic. "Plus," says Cunningham, "it makes the transition easier and helps side-step any stigma about 'seeing a psychologist' when I'm just part of the team, like the nutritionist or child life specialist."

Cunningham helped Ethan understand and control his body better, and find healthy ways to express what he needs to his parents.

For Roberts, the change is summed up in one of the main lessons that Cunningham taught his son, now 8 and in second grade. "She's helped Ethan see that his life is bigger than his disease."

"Dr. Cunningham helped Ethan see that his life is bigger than his disease."

Jeff Roberts