May 19th, 2018 – Why is World IBD Day, or IBD advocacy in general, important? It really isn’t… until it is.
It’ll be ten years since my diagnosis of Crohn’s Disease, and had I not actually been living with the disease, I likely would have never heard of it.
But as I started talking about my illness, I learned that I wasn’t alone.
Soon after I opened up about my illness did I begin to hear from old schoolmates who were also affected by the disease; learned that my neighbor was living with Crohn’s; found out that acquaintances and “friends of a friend” were also affected by IBD in one way or another. It’s been a real eye-opener!
Even though IBD (Inflammatory Bowel Disease) only affects an estimated 5-10 million people worldwide, you likely have people close to you who are directly affected by this disease.
So why are days like World IBD Day important? Because they can change lives.
I’d like to point out that since I’m living with Crohn’s Disease, every day is an “IBD Day” and my ostomy serves as a daily reminder of just how brutal and severe this (currently) incurable illness can get.
When we advocate and raise awareness for IBD, we are shining a light on a disease that rarely gets much attention. And if no attention is being given, there will be no research, no support for patients and their families, and a hell of a lot more suffering.
So what can you do? Quite a bit!
Here some things you can start doing today to help raise awareness and advocate for those living with IBD!
Stuff for everybody:
- Learn more about IBD. This should be the absolute first thing that anyone should be doing. Without educating yourself about IBD, it’s difficult to effectively advocate for yourself or others.
- Donate to IBD charities. Research doesn’t come for free, and there are several IBD charities who help to fund both research and patient-directed support.
- Help support IBD advocates. Some of the most important people in the IBD community are the patient advocates who put themselves out there to help other patients. They often create content and produce educational videos or articles on their own dime and spend much of their time doing it. Sharing their content on social media, donating to them, referring other patients to their website or social media accounts, can really help to amplify their efforts.
What family/friends of patients can do:
- All of the above, plus…
- Participate in charity events and encourage others to donate to IBD charities. Donating is great, but getting involved in the process of fundraising can be a really great experience, too!
- Correct the media. Write to the media whenever an article about IBD is spreading misinformation, fear-mongering, or contains factual errors (i.e. “Irritable Bowel Disease” is not a thing).
- Influence policymakers. Get involved with your federal and/or provincial/state representatives to improve the lives of people living with IBD through policy changes, new laws, government-funded patient support programs, grants, tax breaks, etc.
- Speak with businesses and encourage them to make their washrooms more accessible. Crohn’s and Colitis Canada has a “GoHere Washroom Access Program” that businesses can register for, but even if they aren’t part of a formal program, better washroom access for patients can help tremendously.
What patients can do:
- All of the above, plus…
- Share your story! I can’t overstate how life-changing it can be for other people when they hear your story about living with IBD. Not only can your voice help to inspire others, but it can give new patients hope and belonging.
- Connect with other patients. Become part of the IBD community by joining online forums or local chapter meetings; go to IBD patient events, or participate in various online activities when they happen. Connecting with other patients can help to spread the IBD message further, and it can multiply the impact of our collective advocacy efforts!
Inflammatory Bowel Disease isn’t going away any time soon, but there is so much we can still do while better treatments (and hopefully a cure) are being researched and developed.
So take today, and every day, as an opportunity to learn, speak up, and get involved!