Do you ever feel stuck?
Of course you do, everyone does from time to time. The difference is that when it happens to someone who lives with a form of inflammatory bowel disease (IBD), it could get complicated quickly.
How IBD Affects Us Psychologically
People with IBD are unfortunately more likely to develop anxiety and depression than people in the general population. What’s more, there may also be an increased risk of other psychological conditions.(1) And adding more insult to injury: being under stress might lead to an increased risk of a flare-up.(2)
The association is considered bi-directional. Meaning that while psychological conditions may make IBD worse, they may also happen because of the IBD. It gets murky. It’s also difficult to discuss and write about because people who live with IBD, myself included, would really prefer that we not be told our disease is “all in our head.”
But the research shows what the research knows.
IBD and Stigma
When I was diagnosed with ulcerative colitis in the 80s, there was a significant amount of stigma associated with the disease because of these associations. On top of the obvious fact that it was a bowel disease, of course.
The stigma was one of the reasons that kept me from talking to other people about it. If you have IBD you know what I’m talking about: you’d rather the people in your life not assume that you “made yourself sick.”
I hope you’ve never had those words said to your face. Because they were said to mine, and I know what it feels like.
You’ve Been Told This Before
What does all this mean? It means we’re told to reduce our stress. Lean on the people around us. Seek help from a mental healthcare provider. Not easy things to do.
It also means that I, as a writer and as a patient, am often tasked with writing about these things.
When you have IBD you sometimes have to make choices because of the disease, such as taking a job for the healthcare plan. Changing your plans because you won’t have access to a bathroom. Cancelling a long-planned vacation because you had a flare-up.
And here’s one that really gets attention no matter how carefully you try to address it : family planning.
But what has been on my mind lately is not so much stress or anxiety but being stuck. Being stuck in patterns that aren’t helpful. It’s not a clinical term: there aren’t any research papers on it. But I think it’s something that people who live with any chronic illness need to consider.
We’re trying to make decisions that would support our health, but those choices can make us feel trapped.
Let’s Get Unstuck
If you want things to be different you have to do something new. It doesn’t have to be something major, like leaving a relationship or moving house. (Although it could be.) It can be a small habit that you add to your day.
Here’s some ideas on what to try in getting unstuck:
1. Try attending a support group. There are many for people with IBD or other conditions. Discovery is difficult which is why I often put them in my email newsletter or share them across social media. You can also ask for recommendations on your social media platforms. It’s important to remember that you can engage with a group when needed: it shouldn’t become a chore.
2. Look for the positives. It’s OK to feel as though there are no good outcomes from living with chronic illness. When you’re ready to try to reframe it, you may discover that you’ve found community, purpose, gained empathy, or patience during your journey. You might not feel this way every day, but looking for the highs can help you through the lows. A practice of gratitude has been shown to help people feel less stress. (3)
Get ideas on starting a gratitude practice: https://positivepsychology.com/gratitude-exercises/
3. Talk to your healthcare team. Working with healthcare providers can be hard. If you have a supportive provider on your team, bring up how stuck you are feeling and see if they have any suggestions. If you can’t identify anyone who is in your corner, it may be time to look for a new provider or consider finding a therapist or health coach to give some outside perspective. If none of those suggestions are feasible: let a friend or family member in on your thoughts and allow them to help you.
Ideas on working with healthcare providers: https://www.improvediagnosis.org/dxiq-column/feeling-dismissed-and-ignored-by-your-doctor-do-this/
4. Engage in a new hobby. It doesn’t have to be complicated, unless you want it to be. Think about something you’ve always wanted to learn or to do. Take one small step towards making it happen. Then decide when you’re going to take the next step. Try to let go of the idea that you’ll be “bad” at your new hobby, because it’s not about suddenly learning to sew all your own clothes. It’s about finding a new place to put your energy and thoughts and seeing how that helps you get your gears moving again.
5. Do something physical. Physical can mean anything that gets the body moving. Stretching, taking a short walk outside, having a dance party in the living room, or doing a gentle yoga routine to a video. It doesn’t have to be a half hour or more of rigorous activity. Make a decision that you’re going to spend a certain amount of time moving your body, and stick to it for a few days or a week. Then consider doing a little bit more, if you’re able.
How to get started with fitness: https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/fitness/art-20048269
People like lists of 5 or 10 things. (So do editors.) That’s why you see these types of numbers so often in articles like this one. But I’m also going to add one more and make it all lopsided. Because what about IBD is even?
6. Call someone you love. Or maybe text them. Write an email (if anyone besides me does that any more)? It’s difficult to keep up relationships. Social media is littered with the memes on how hard adult relationships can be, and it’s not hyperbole. It’s difficult, but it’s worth doing, and it takes work. Don’t overthink it: just send the text.
How reaching out to others helps you and them: https://www.verywellmind.com/reaching-out-to-others-goes-a-longer-way-than-we-think-6500660
What will you do today for yourself to help you feel less yuck and more yum? I gave you some ideas. Did it work? Or — ouch — did it not work? Maybe they’re not the right ones for you. Do you have any for me? Tell me about it!
Get in touch:
- Ge L, Liu S, Li S, et al. Psychological stress in inflammatory bowel disease: Psychoneuroimmunological insights into bidirectional gut-brain communications. Front Immunol. 2022;13:1016578. doi:10.3389/fimmu.2022.1016578
- Black J, Sweeney L, Yuan Y, Singh H, Norton C, Czuber-Dochan W. Systematic review: the role of psychological stress in inflammatory bowel disease. Aliment Pharmacol Ther. 2022;56:1235-1249. doi:10.1111/apt.17202
- Kreitzer MJ, Telke S, Hanson L, Leininger B, Evans R. Outcomes of a Gratitude Practice in an Online Community of Caring. J Altern Complement Med. 2019;25(4):385-391. doi:10.1089/acm.2018.0460
Bisgaard TH, Allin KH, Keefer L, Ananthakrishnan AN, Jess T. Depression and anxiety in inflammatory bowel disease: epidemiology, mechanisms and treatment. Nat Rev Gastroenterol Hepatol. 2022;19:717-726. doi: 10.1038/s41575-022-00634-6.
Yu R, Liu C, Zhang J, et al. Correlation analysis between disease activity and anxiety, depression, sleep disturbance, and quality of life in patients with inflammatory bowel disease. Nat Sci Sleep. 2023;15:407-421. doi: 10.2147/NSS.S407388.