When I started writing this post I thought carefully of how the topic should be worded. The last thing I want is to give the perception that having active symptoms and inflammation is better than being in remission. We know the challenges that are faced during a flare. But there is little talk about the challenges faced during remission.
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The definition of remission is very broad and can have different meanings depending on the person. For example, one of my friends is in remission without active inflammation of Crohn’s disease (Great!) but still has symptoms once in a while and takes medication to maintain the remission. Compared to when she was first diagnosed the amount/frequency of inflammation and pain has been greatly reduced. Other definitions of remission may included: coming off all medication, decreasing medication, decreasing symptoms, no symptoms at all, etc. In fact, the definition of remission according to your doctor may vary from your own personal definition.
My friend was telling me how she felt like she couldn’t advocate for IBD while being in remission. She felt she could not relate to people with IBD and that those people would not believe or trust her opinion because she was in remission. She enjoyed being in remission but felt like she didn’t have IBD because she didn’t have symptoms (obviously she still has IBD, there is no cure). When sick all of her time and energy was spent on doctors appointments, pain, medications, where the closest bathroom was, and how to make it through the day. So much of her daily existence and thoughts were about IBD.
In remission, she felt kind of lost. On top of that, she felt guilty for talking about IBD with people who have active symptoms because she was in remission. Then she explained that she felt guilty for not being 100% happy that she was in remission. Yikes! Basically, she had been through a marathon with her IBD, and now she didn’t know how to just take a stroll in the park and enjoy the scenery.
Have you ever felt this way?
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Although there is little research on remission guilt or studies involving the psychological aspects of patients in remission, a study found that 29-35% of patients who were in remission had depression and/or anxiety.
The study also discussed that patients in remission who scored high on depressive scales and low on quality of life had an increased risk of remission of IBD (Mittermaier, et al., 2004). This shows the importance of maintenance therapies during remission. This may include continuing to take medication, decreasing stress levels, and maintaining social support.
Another study found that behavioral interventions decreased relapse rates by 56%, and supportive therapy decreased relapse rates by 18% (Keefer, et al., 2011). These studies show the need for more research on maintenance of remission and the psychological aspects of patients in remission.
If you are struggling with adjusting to life with IBD in remission remember that it is still important to keep doing what put you in remission. Your health is important to maintain remission. I encourage you to be grateful that you found a treatment that worked for you! You may feel like my friend did, that she couldn’t advocate while being in remission. Remission is a time for you to take a leadership role in advocacy, not step back. If you are in a support group, instead of just sitting and listening, ask questions, start topic discussions and take an active role. Start conversations with people about IBD. Maybe this is the time to run a marathon or bike for IBD research.
You have a wealth of knowledge that you can share and benefit other people. Patients who are going through a hard time with IBD will look up to you for being strong and will be empowered that you are advocating for them and yourself! You are an inspiration to the patients who have active symptoms, who are in the hospital, and who don’t know if they can make it through the day.
Instead of feeling guilty for being in remission, be PROUD that you fought and conquered your most difficult IBD times and show other patients that they can do the same!
Gut Feelings (Inspirational Quote of the blog)
“To the world you may be one person, but to one person you may be the world” Dr. Seuss
Disclaimer: This information does not replace a medical doctor or mental health professional. Please talk to your doctor about concerns you are having.
References
Keefer, L., Kiebles, J. L., Martinovich, Z., Cohen, E., Van Denburg, A., & Barrett, T. A. (2011). Behavioral interventions may prolong remission in patients with inflammatory bowel disease. Behaviour Research and Therapy, 49(3), 145-150.
Mittermaier, C., Dejaco, C., Waldhoer, T., Oefferlbauer-Ernst, A., Miehsler, W., Beier, M., . . . Moser, G. (2004). Impact of depressive mood on relapse in patients with inflammatory bowel disease: A prospective 18-month follow-up study. Psychosomatic Medicine, 66(1), 79-84.
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