If you had x-ray vision, what would you do with it? Look through walls and spy on your co-workers? Find your dog’s lost ball under the couch, or lazily peek through your fridge to see if you’re almost out of your favorite Greek yogurt? Or maybe, like a traditional superhero, you would wander your town looking for clues behind the doors that no one can enter, and use your powers for the greater good.
What if your x-ray vision allowed you to not just see through things, but to see the invisible? I was given that super power, in a way, because of my life with inflammatory bowel disease (IBD).
As many patients know all too well, the difficulties associated with IBD are often invisible to others. It’s the hours when no one is around as you traverse from your couch to your bathroom; it’s the pain and fatigue that lurk in your body; it’s disappearing from your friends as you drive to the doctor’s office; and it’s the emotional pain too - the loneliness and isolation - when it feels like no one understands your experience.
My journey with IBD dominated my college experience. I realized, during that time, that one of the most important tools I needed was support and understanding. It hit me one time, on a particularly symptom-ravaged day, that no one I knew understood my experience and my pain. No one knew what it was like to be me, living with a chronic disease. I needed those around me to use their x-ray vision and see the invisible illness inside of my body and mind.
Slowly, I gained the power and confidence to allow people to see aspects of my disease and the effects they had on my life. I learned to be more open and vulnerable, allowing those around me to know about the painful and embarrassing aspects of my IBD experience. I learned to tell them about my daily life, my struggles, and how my disease changed me, sometimes for the better. To my surprise, letting people see the reality of my disease didn’t drive them away, and the more I learned to tell my story and make it visible, the more I built a strong support system around myself.
The importance of telling my story while also being sensitive to the stories of those around me was not lost. I began to pay closer attention to small details of everyone’s experiences. I paid attention when they showed signs of tiredness or sadness, or even those of strength and pride. I looked through people’s exteriors and saw them not just for what was immediately visible, but as a complex person who lives a complex life, potentially with a disease like I do.
I began asking others about their experiences, what they want others to know about their lives, and what they most need in terms of support. I wanted to know what they want to make visible to others. I grew my x-ray vision of empathy and awareness, because I know just how much it can matter.
This is the superpower that IBD gave me and now I work to give everyone around me the same superpower. Together, we can influence the world and that’s not something in an alternate universe. It’s something we already have the power to do.
To help reveal the true impact of IBD and highlight the strength and resilience of the patient community, Takeda launched IBD Unmasked, a global awareness initiative launched in the U.S. in partnership with the Crohn’s & Colitis Foundation of America (CCFA) and IBD community members. Join our community at IBDunmasked.com and together we can unmask the truth behind this incessant villain.
Megan has ulcerative colitis (UC) and is one of the co-founders of The Great Bowel Movement (GBM), which aims to empower those with IBD “to embrace their disease, be proud of their experience, and spread awareness throughout their communities.” Megan is very interested in athletics and fitness, and takes on IBD with a mix of strength and humor. Building on her experiences facing even the toughest circumstances, Megan has worked to provide a voice to others, becoming a fearless force in the IBD community. She is a veteran participant of CCFA’s Team Challenge and Camp Oasis.
Follow Megan on Twitter: www.twitter.com/thegreatbm.