When I was in high school, I started developing issues with my gut. Being in pain and taking frequent trips to the bathroom became part of my life, but it wasn’t until I started seeing bloody stool that I decided to see a doctor.
Within in a few months, I was diagnosed with ulcerative colitis, an inflammatory bowel disease (IBD) that affects the lower areas of my GI tract. Crohn’s disease is when IBD attacks further up. In both diseases, healthy cells start attacking other healthy cells thinking they’re bad. This can lead to open ulcers and a host of other issues ranging from bloody stool, diarrhea, weight loss, intense stomach pain and fatigue.
Challenges of living with an invisible disease
Having any disease isn’t easy, but having IBD can add an extra complexity because it is often invisible to other people. I look healthy. I even look in the mirror sometimes and find it hard to see myself as a sick person, but I feel it.
When I was younger, I liked hiding my disease and showing the world that I could be the same as anyone else. My disease wouldn’t hold me back from accomplishing my goals. But then pain and symptoms would start (often called a “flare”) and I’d be reminded that I have IBD.
Today, 10 years after I was first diagnosed, things are not perfect, but I have learned a lot. There’s not much I can do about all the medication I have to take, but there is a lot of of research on the connection between the gut and the brain, so I try to focus on reducing stress as a way of healing my gut and reducing my symptoms. I incorporated yoga and exercise into my daily routine, started listening to classical music and picked up a guitar to teach myself a new hobby.
Opening up about my disease
I can be quite the perfectionist and I strive to be the best at what I do, so telling people about my disease always felt like it was exposing a weakness. But I have learned that colitis is something that forces me to slow down — not a weakness. It can’t stop me from pursing my dreams. Once I realized this, I started to talk more about my condition at work and found that it felt good to be more open about it.
What I realized was that not talking about my disease actually made it harder to talk about when I really needed to and was creating more stress. The simple and friendly question — “How are you?” — could quickly turn to tears as I tried to explain why I wasn’t well. The more I talked about it with co-workers, the more comfortable I became talking about it with others. Opening up about my disease is therapeutic.
Some tips I’ve learned on my IBD journey so far
Learn to talk about your disease. Know how to pronounce all the medical terminology and your medications. Start practicing with your loved ones and people you trust and then slowly enlarge your circle, sharing with others. The more you talk about it, the more comfortable you’ll be with it, which in turn helps others feel comfortable with it, too.
Learn how to describe your pain. I often find it helpful to write down a description of my pain or my reaction to a medication while I’m experiencing it. It can be hard to recall the details later in the doctor’s office.
Write things down. To do lists, shopping lists, events … putting everything on paper allows you to rely on your notes instead of your brain. This trick comes in handy when experiencing a high pain day when you don’t have the energy to think.
Have rehearsed responses to standard social questions. On the days I feel the worst, I don’t want to have to get into a deep conversation about my pain and disease, so I respond, “Just having some gut issues!” or “Not feeling well.”
Learn to reduce stress. For me, meditation and yoga work best, but there are lots of other stress-reducing tactics. I don’t have a lot of control over my symptoms, but I can control how I deal with stress.
Find your happy place. If your heart feels light and you can’t stop smiling, that’s a good sign it’s one of your happy places. Make sure to surround yourself with the experiences, people and animals that make your heart happy. Walking in the woods, being close to the ocean and climbing rocks are all things that bring me to my happy place.
It’s OK to be angry — for a little while. When you’re exhausted and tired of feeling pain, emotions like anger and frustration can take over. It’s okay to have those feelings but try not to hold on to them for long. Anger and frustration can lead to a snowball effect and increase your stress levels.
Treat others with kindness at all times. Being nice to others isn’t only good for them, it’s good for you, too. It’s hard to feel stress when you’re smiling and being kind. I look at it as another part of healthy living — eat your vegetables and be kind.
About our blogger: Julie works in Marketing and Communications at Boston Children’s Hospital. She hopes that her experience living with ulcerative colitis can help others navigate their IBD journeys.