Why Do We Need IBD Awareness?
Things have changed in the nearly two decades since I was first diagnosed with Crohn’s disease. In that time, a combination of more people speaking up about living with IBD and the power of the internet have made IBD not so much of a mystery as it was previously. However, I still think we have a long way to go in making our voices heard. But why is it so important that others hear more about Crohn’s disease and ulcerative colitis? I believe there are three main purposes of spreading this awareness.
The first, and perhaps most obvious reason is fund raising. (It always seems to come back to money, doesn’t it?) But unfortunately, there are many things that won’t be accomplished without money, such as research for new medication, better diagnostic tools, and hopefully one day a cure.
Scientific research is a long and expensive process, but it’s vital to the ongoing development of new treatments for patients and a better understanding of the underlying cause behind each IBD diagnosis. Beyond research, funds raised can also help with patient care and support. This may mean better equipment at local hospitals, more highly skilled physicians studying gastroenterology, more availability of education programs for patients and even opportunities for kids with IBD to attend an event where they can meet others who are dealing with similar situations.
Getting the word out there about IBD will help to bring in funds to support these goals. If people don’t know what Crohn’s disease or ulcerative colitis are, then they aren’t going to be willing to donate to help those who are living with it.
Awareness also brings together a community of people. When I was first diagnosed, I didn't know anyone else who also had Crohn's disease. It would be years before I met other people who had also gone through what I had and finally felt a connection with the community.
Sharing our stories shows others that they aren’t alone. I remember how excited I would get when reading someone else’s story and think, “That’s just like my experience! They actually know what I’ve been through!” There is great power in knowing that you aren’t the only one and that others have walked a similar path. Dealing with IBD is difficult enough without feeling like you’re facing it alone.
Finally, a fundamental goal of awareness is to develop an understanding of these diseases. A better understanding of IBD can change nearly every relationship in the life of a patient: family members can provide better care, friends will realize why they don’t always feel like hanging out, employers can be more flexible with certain jobs, even doctors need a better understanding of what the life of a patient with IBD entails and the highs and lows that are experienced.
Others need to know why one day their friend with IBD may have plenty of energy, but the next day they can hardly get out of bed. They also need to see that just because two people are both diagnosed with Crohn’s disease doesn’t mean they have the same experience. They need to understand that these diseases are not just about having to go to the bathroom more often that other people. Understanding what these diseases are, and what they are not, can help to strengthen these relationships and help those living with IBD to get the support they need.
So keep on sharing! Tell your stories, share links that are informative and inspiring. The more we speak up, the more we’ll be heard.
What type of IBD have you been diagnosed with?