IBD Awareness: People Behind the Stats
Inflammatory bowel diseases – which encompasses Crohn’s disease, ulcerative colitis, microscopic colitis, Behçet’s disease and more – can affect every part of a person’s life, everything from physical capabilities to maintaining a job and relationships. And despite the fact that over 1.6 million Americans have been diagnosed with IBD, the disease is still grossly misunderstood.
Last year, we conducted a survey of over 3100 individuals with IBD (2000 with Crohn’s and 1200 with UC) and the results were phenomenal. But these results are more than just numbers; they represent real people with real experiences and to ensure we do not forget that, we asked three of our IBD advocate contributors to provide their reactions to some of the survey statistics. Here are their thoughts:
Over 60% of survey respondents experience arthritis/swollen joints because of their Crohn’s disease
“Although many assume that inflammatory bowel disease will only impact the digestive tract, it can actually affect almost any part of the body, including your joints. At one point in my life, during a major Crohn’s disease flare, it was actually the arthritis and swollen joints that caused me the most pain and issues. It got to the point that I could hardly even sit up in bed, and when I could it was accompanied by an enormous amount of pain, and I had to use a walker to make it the five feet to the bathroom. That’s what people don’t get about these diseases, they are so much more than just stomach pain or running to the bathroom—they literally can impact every area of your life in some way or another.” – Stephanie
48% of respondents feel somewhat uncomfortable talking with friends and family about their experiences with UC
“The invisible and somewhat embarrassing nature of this disease can wreak havoc on someone’s ability to not only talk about their condition with others, but want to be around people in general. Oftentimes, people with UC feel so misunderstood, so guilty, and so scared about what sharing does to their loved ones that it is painful to acknowledge what life with ulcerative colitis can really be like. There is nothing worse, in my opinion, than feeling like there you are all alone to try and navigate something that is so complex in both a physical and emotional nature. ” – Marisa
When asked for one word to describe UC, 52% of respondents wrote “unpredictable”
“I think that unpredictable is a very accurate way to describe UC. When I was first diagnosed with UC, I wasn’t given much information beyond “it’s treatable!” With that information in mind, it’s a devastating blow when you realize that UC isn’t a “blueprint” type disease. Every disease is different. You don’t know from one person to the next how the disease is going to play out. You don’t know from one day to the next if you’ll be out running a marathon or in the hospital having emergency surgery. No matter what you do, you cannot predict the course of UC. That’s what makes it so frightening.” – Amber
These are just a few of the hundreds of IBD statistics we’ll hear this week. These numbers are powerful, but always remember that each of these numbers represents a person – a brother, a sister, friend, coworker – who spends every day managing this invisible illness.