Helping Others Understand Crohn's and UC
Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. We want to shed light on these challenges during Crohn's and Colitis Awareness Week (December 1-7, 2019). Crohn's and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here's what they had to say!
When asked: "What’s one thing you wish more people understood about Crohn’s or UC?", they shared that Crohn's and UC are much more than a "bathroom disease." The condition is often invisible, but that doesn't mean that someone isn't in pain.
Each person with the condition is different
Brooke talked about the different triggers that patients experience and how one thing that helps one person may not be the same for what helps another person. She said, "Everyone’s triggers are different. What is healthy for some is not necessarily fit for all. The best thing to do for a patient is to listen before suggesting. The ideas you have about living with a chronic condition like Crohn’s disease or ulcerative colitis may actually be a misconception. If you are eager to help a patient, you can only do so with knowledge of the disease and the patient experience."
Crohn's and colitis are more than a "bathroom disease"
Many people do not understand that Crohn's and UC span far beyond the bathroom. Colin shared: "I wish more people understood that Crohn’s and UC are more than just a bathroom disease. Yes, I understand that frequently going to the bathroom is kind of the “trademark” of these diseases, but the impact it has on people goes so far beyond that. The ways Crohn’s and UC attacks our bodies goes so far beyond the bathroom."
Sahara also talked about this. She said, "Symptoms are not confined to the intestine. Five years ago, I didn’t really see IBD being talked about in the media, and while I do think there has been improvement (although I can’t be sure as I am much more active in the community now than I was then), IBD is still mainly portrayed as a “bathroom disease”. Urgency, abdominal cramps and often resulting surgery are common phrases, but that doesn’t even really begin to tell the story of life with inflammatory bowel disease."
Unsolicited advice from others
Amanda shared that "I wish more people understood that their suggestions, while often made with the best of intentions, will not (CAN NOT) change my health. That the cause of Crohn’s disease is not universal or currently even pinpoint-able. That there is NO CURE, only treatment that requires frequent and constant monitoring. That even if I look well I might not feel well, and even if I feel well, it can change in an instant."
IBD is invisible but it's always present
Natalie talked about how Crohn's is always present, even if a person is in remission. She said, "One thing I wish more people understood about Crohn’s is that even though you haven’t required hospitalization in years for a flare, it’s still a part of your life on a daily basis. Every single decision you make from the start of your day to the end of it requires thinking on your part about how it’s going to impact the way you feel. As an invisible illness, it can be complicated because you can easily mask the pain with a smile or by isolating yourself."