There’s one question that I’ve been asked many times, and it’s one that I also ask others when I conduct interviews:
“What advice would you give to people who are newly diagnosed with Crohn’s disease or ulcerative colitis?”
I see the importance of getting both new and veteran patients to give their experience with a new diagnosis of inflammatory bowel disease (IBD). It might be fair to say that most people, in hindsight, whether this is weeks or decades later, can point out where their journey could have been improved.
How a Pat Answer Falls Short
For my part, I usually say that the most critical step patients can take upon learning of a new diagnosis is to become better educated on the disease. Education is something that I believe in deeply, and I’ve spent most of my career creating content to help patients to learn about IBD.
But I don’t think that I’ve ever pointed out that the learning never stops. That it is a series of steps on a journey. That sometimes there will be big steps forward. Sometimes there will be smaller ones.
Even, at times, there might be steps backward, to unlearn unhealthy habits, internalized stigma, or the myths surrounding IBD and chronic illness.
There’s Beauty, and Frustration, In Our Individuality
I wish I could provide a roadmap for every person with IBD and give them the exact waypoints. The problem is that no two journeys with IBD are the same. The route taken will depend on so many factors, including background, ethnicity, gender, and even learning style.
What I can say is that the IBD community is vast and diverse. There’s no shortage of not only ways to learn about the disease itself, as well as how to live with it, which are two different things. The trick is to find the tools that will work best and settle into a comfortable stride.
Before You Go: Take This With You
My answer to the question probably won’t ever change. But what I can do is offer some tips on how to start the learning journey:
- Talk to your medical team. While first starting out, look to the experts who you’ve trusted with your care, and ask them where they recommend you find the information that’s most important to you. Keep asking at every visit, because your needs will change over time.
- Keep an open mind, but don’t compare. Remember that most people live well with their IBD, and therefore are not posting about it on social media. People with severe disease may be overrepresented in online spaces. Your waypoints will be uniquely your own.
- Our understanding of IBD changes over time. Researchers and scientists are learning more about these diseases every day, which is why our learning as patients never stops.
- It’s OK to come back to things when you’re ready. There’s so much to learn and it can quickly become overwhelming. The goal should be to understand enough to make the best decisions for you, but don’t forget the purpose of becoming educated is to live your life with joy and purpose.
- Don’t make the journey alone. IBD is a family disease because it affects everyone around us in various ways. We can’t control the reactions of others, but we can share what we learn and grow together with the people who are closest to us.
Experiences Are Solitary; Learnings Are Communal
Every person with IBD finds their own way through the disease. How you treat it, who you take into your confidence, what your goals are, and how you live with purpose will look different for you than it does for anyone else.
The most important thing to remember is that nobody has to take the journey alone. In fact, I’d argue that while these diseases can be incredibly isolating, living with IBD is actually communal. We make every step of our journey with all the knowledge and experience of those that came before us, and we forge ahead, making the path wider for those who come behind us.
You may feel alone while prepping for a colonoscopy, struggling through fatigue, or coping with extra-intestinal manifestations, but always remember that you are part of a strong community that is better for having you in it. Taking advantage of the ways in which you can learn about your disease and contributing to the community is a gift that you can give to yourself.