The Role of Stigma in Irritable Bowel Syndrome
APRIL 21, 2013
Tiffany Taft, PsyD
This post, which originally appeared on the IBS Impact blog, was written by Tiffany Taft, PsyD. of Oak Park Behavioral Medicine, LLC. and Northwestern University Feinberg School of Medicine. She works with adults and children with a range of chronic medical conditions, with a special interest and expertise in gastrointestinal disorders like IBS.
In this article, Dr. Taft writes about her ongoing research interest of stigma, how it relates to the need for greater IBS awareness, and what readers can do to further that cause. Share this with your patients when discussing the psychological effects of their IBS.
“What did you do this time to get sick?” “You’re just too stressed out, get a grip.” “How can your symptoms be that bad when there’s nothing medically wrong with you?”
How many people living with IBS have heard some version of these statements at some point in their life? While not unique to IBS, chronic illness stigma is a pervasive and complex problem that impacts millions of people every day. You may have heard the term stigma before, which originated in ancient Greece to refer to bodily signs to expose something unusual or bad about the moral status of a person. In 1963, the sociologist Erving Goffman expanded the concept of stigma to include:
“An individual possesses an undesired differentness from what [people] had anticipated…we believe the person with a stigma is not quite human…we may perceive his defensive response to his situation as a direct expression of his deficit and a justification of the way we treat him.”*
The effects of stigma on patient outcomes are widely documented, with the most research being done with those living with mental illness or HIV/AIDS. From these studies, we know that stigma can do the following:
- Increase the risk of an illness to relapse
- Decrease the likelihood that a person will take their medication as prescribed
- Increase feelings of anxiety or depression
- Decrease a person’s quality of life
- Increase feelings of social withdrawal and isolation
So what makes an illness more likely to be stigmatized? Perhaps surprisingly, an illness that is invisible or concealable is more likely to be stigmatized than one that is more obvious to others. The more disruptive the symptoms are, the more likely a condition is to be stigmatized. A disease that has periods of relapse and remission is more likely to be viewed negatively by others. The origin of the condition, whether it was present at birth, the result of an accident, or seems to be under the person’s control also contributes to stigma. Finally, the aesthetic qualities of the illness contribute to stigma.
Based on this list, it makes sense that people with IBS feel stigmatized. IBS is an invisible illness that usually has periods where symptoms aren’t too severe and other times when they can be downright disabling. The discussion of bowel symptoms like diarrhea, constipation, gas and bloating are generally not welcome in regular conversation, or are met with ridicule. And because IBS is not well understood, and lacks an underlying obvious organic cause (there are no ulcers in the colon, for example) there is an implication that the symptoms aren’t real, or really as bad as the person says.