Posted by Noel Jacobs on June 07, 2012
When my daughters were younger, they loved The Little Mermaid, or more specifically the Disney version, with beautiful Ariel, crazy-scary Ursula and, most saliently, her two evil, ever-present eels, Flotsam and Jetsam. In Disney's tale they are menacing, conniving, willing to terrorize beautiful and sweet creatures of the sea. Our girls used to squeal and scream, grabbing my wife and me for safety whenever Flotsam and Jetsam showed up on screen.
Not unlike the evil sea-witch Ursula, IBD can bring its own kind of flotsam and jetsam into our patients' lives. Sometimes it feels meaningless, like debris after a shipwreck, sometimes menacing and purposeful like Ursula's eels. In his blog post "For a Girl Recently Diagnosed with Crohn's Disease,"' Bill Brenner describes his early course of Crohn's, his eventual return to full living, and what he calls the "mental byproducts" of IBD (http://billbrenner1970.wordpress.com/2012/05/03/for-a-girl-recently-diagnosed-with-crohns-disease/). He is strong, and positive, although he pulls no punches for a little girl who needs to be prepared for what's ahead. He also tells her he knows she'll be strong, too. The message is real, and it is beautiful.
All this is to say, there are physical and psychological “byproducts” (Bill’s apt term) of IBD. Pain, bleeding, complicated medical and dietary regimens that sometimes feel like wishful thinking, these all create difficulties. Children lose weight and may be teased for being “scrawny,” or become bloated and puffy from steroids and be teased again. These horrors might happen right in the middle of adolescence, when physical appearance means so much socially. Missing school for doctors’ visits, procedures and hospitalization (some of which may cause traumatic responses themselves) can bring a loss of social connectedness and peer support. Weren't childhood and adolescence supposed to be about fun, about growth and accomplishment?
IBD can, in fact, induce a feeling of lost childhood. Depression, anxiety, body image problems, purposelessness and even suicidal thoughts can and sometimes do accompany this loss. When this happens our young patients need understanding, safe space to openly feel and express their pain. Sometimes they need counseling to help repair real psychological damage and build coping.
And yet there is other debris, like beautiful driftwood, that is found (or created!), picked up, and used in amazingly positive ways. Our patients with IBD can be incredibly strong, like Bill. They have really good moments and smile in their pictures. A teenage patient recently responded on a survey, when asked about how IBD affects his appearance: “I’m sexy and I know it!”
They often learn that pure, simple pleasure can be amazingly powerful, and in fact they may figure this out much earlier than their friends who don't have such daily challenges. They may have less social time but many develop tough, tight-knit friendships that are much more healthy and supportive than many of their schoolmates. They might know the true value of precious things better, and earlier. They sometimes appear to be "old souls"- as if the negative debris of IBD helped them develop wisdom, purpose and inner quietness faster. Flotsam and Jetsam don’t always win. Love, support, a sense of humor, and –sometimes – help from a psychologist, rescue them from the eels and help them craft their own future.