[Editor’s Note: IBD is definitely not always guts AND glory…sometimes it’s just guts…and as Jennie puts it – disobedient guts. Staying positive and empowering others to do the same is important to Jennie, but she recognizes that it’s also important to stay real. And it is a very real challenge to live with a chronic illness each and every day – physically and psychologically. Read Jennie’s musings about her most recent Gutsy Generation post, titled “The Shield”.]
My blog posts usually focus on living well and living large with IBD – my goal is to always portray a 21-year-old finding her way in life with disobedient guts. Someone once told me that they admired my ability to be vulnerable, which at the time I was mortified by this comment. Vulnerable? What an insult! I thought. But now I think it is one of the nicest compliments I have ever received.
Why the change in attitude? Being vulnerable and exposing your scars – literally or metaphorically – shows that no one is perfect, everyone struggles, life is hard and it’s about getting through and getting up. Every individual at one time or another will face anxious moments, sad moments, frustrating moments, and the like – it’s normal and in so many ways it’s what it means to be human. This is all the more important in pediatric chronic illness, when children with healthy psychology are confronted with incredible physical and emotional trauma. It’s like buying a map to get to a different city but having the car break down on the way – it’s critical to support mental health alongside physical health in flares and remission.
It’s not that it’s ‘all in your head’ by any stretch of the imagination, it’s that it’s impossible to tease apart psychological health from physical health – anyone who is nervous feels butterflies in their belly. The psychosocial issues of IBD warrant discussion and reflection and not just from the ‘outside in’ (i.e., doctors and researchers), but from the inside out, where patients can stand up and say – without shame or embarrassment – that they’re struggling and need help. This is a way we can truly improve care now.