Why My Photo Hurts People Facing Inflammatory Bowel Disease
What do you see in this picture? I see a strong, active, happy and athletic adventurer. This is me kicking butt on a 44-kilometer hike with a 1,380-meter elevation gain in the Canadian Rockies over three days while carrying all of my gear.
I hate this picture.
You might be wondering how I could hate this picture. It features breathtaking views, shows the pure joy I am feeling and captures my accomplishment.
I hate this picture because it only shows you one side of me. The victorious me. What this picture doesn’t show you are the challenges I was facing at that moment. Can you see what’s wrong? I’m good at hiding it. There are no obvious signs, no visible scars, no tubes, no bag. I have Crohn’s disease. At that moment and many more during the trip, I had cramping and abdominal pains, possibly from apples I ate. It’s not the best feeling to have being in the middle of nowhere with limited washroom access.
The picture at the right is my reality. It’s my bowel-saving Remicade IV that I receive every eight weeks at double the recommended dose for my body size. What people don’t see in my goal-accomplishing photo is the behind-the-scenes shots. My treatments allowed me to avoid bowel resection surgery due to a stricture I have. It has given me a better quality of life. I still have to deal with urgency issues, constant diet changes, blood work, doctor follow-ups, cramping, joint pain, side effects from my medication and, of course, fatigue.
I feel my photo hurts people who have inflammatory bowel disease (IBD) because it shows me living life, climbing mountains, playing sports, and mostly, having a good time. They don’t show the bathroom breaks; bed rest days; hospital visits; internal scar tissue and damage; the pain and constant food battles.
I have an amazing support system and a long list of goals I want to achieve. Despite fighting a chronic disease, I truly believe I will accomplish anything I set my mind to. It may take longer, or I might have to plan things a bit differently, but all things are achievable. I’m lucky, patient and grateful that despite ongoing symptoms and a few bad years, I have had good years where I’m well enough to go after what is important to me.
But it doesn’t come easily. It’s a fight, sometimes daily, to get those amazing pictures. I believe my photo hurts people with inflammatory bowel disease because people see my strength and not my challenges. Without me telling you I have inflammatory bowel disease, you might have never known. I want people with IBD to know that you can reach your goals and dreams, but I also want everyone else to know that an estimated 1-1.3 million people in the U.S. have IBD, according to the CDC. They face a painful, daily battle, and there is no cure. I hope anyone who sees my photo understands that even though I’ve accomplished my goals, I still face many challenges.
Follow this journey on Crohnie on the Go.