Guest Post for IBS Awareness Month: Stigma and Chronic Illness

This week’s guest blogger is Tiffany Taft, PsyD. of Oak Park Behavioral Medicine, LLC. and Northwestern University Feinberg School of Medicine. Dr. Taft and her partner in private practice, Stephanie Horgan, LCSW, work with adults and children with a range of chronic medical conditions, with a special interest and expertise in gastrointestinal disorders like IBS and IBD. Dr. Taft and Ms. Horgan also share blogging at “Mind Your Body.” Thank you to Dr. Taft for volunteering to write for IBS Impact 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. To participate in some current research studies for IBS involving Dr. Taft or her colleagues, see the Northwestern Center for Psychosocial Research in GI.

“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.

In 2009, I published the first study to systematically evaluate stigma perceptions in people living with IBS.  We started the project by interviewing several patients and asking them what their interactions had been like with friends, family, co-workers, and their physicians.  We found that 57% of people we interviewed reported feeling some degree of stigma toward their IBS, and that the greatest sources of stigma came from friends, co-workers and employers.  Themes that were endorsed included that the public has very little knowledge about IBS, the illness is not taken seriously, there’s an implication that symptoms are “all in their head” and self-inflicted.  Logically, many of our study participants were hesitant to tell others that they had IBS for fear of negative reactions.

To follow up with this, I compared the stigma experiences of patients with IBS to those with Inflammatory Bowel Disease (IBD), such as Crohn’s Disease or Ulcerative Colitis.  Participants with IBS reported significantly more stigma, especially from health care providers, with 27% of IBS patients saying they experienced moderate to high levels of stigma compared to 8% of those with IBD.  The finding that people with IBS experience stigma from health care providers is important; anecdotally, I can attest to hearing many stories from my clients with IBS who are frustrated by their interactions with physicians, and with some we work to undo the damage done by the “all in your head” insinuation they’ve received for years.  More recent studies repeatedly show that a positive physician-patient relationship is very important in the successful treatment of IBS, but patients report that their expectations often aren’t met.

So, that’s great, Dr. Taft.  What can be done?  Unfortunately stigma is a tough nut to crack, but thanks to the hard work that’s been done in other areas like mental health and HIV we know what can help reduce the effects of stigma.  One of the best remedies for stigma is increasing awareness, which normalizes a condition and brings it into regular conversation.  Patient advocacy organizations, like IBS Impact, make an enormous difference in spearheading awareness campaigns and educating the public about the condition.   Other things that you can do include:

  • Learn and share the facts about IBS and about people who have IBS, especially if you hear or read something that is untrue.
  • Listen to the concerns of the people whose attitudes you want to change.  What are their feelings about IBS?  Do they have any fears?  Misinformation?
  • Assert yourself.  Be frank with the person and use “I” language, such as “I felt really hurt when you implied I did something to cause my IBS.”
  • Generate conversations about the stigma of IBS on a regular basis.  Be creative in doing so, like using Facebook or Twitter to spread the word about IBS stigma.
  • Use humor.  This can dispel some of the tension that comes with confrontation and can also disarm a person who is reacting negatively.  For some, this comes more naturally than others.  If this is a strength you have, use it!

I would like to thank Nina Pan of IBS Impact for having me as a guest blogger for IBS Awareness Month.  If you have any questions, feel free to email me at ttaft@opbmed.com.  You can also follow us on Facebook (facebook.com/opbmed) and Twitter @OPBMed.

*Goffman, E. Stigma: Notes on the Management of Spoiled Identity. Simon & Schuster, Inc. 1963

Dr. Tiffany Taft is a licensed clinical psychologist and is a leading expert on the psychological and social issues of chronic digestive illnesses.  She is co-director of Oak Park Behavioral Medicine LLC, a private practice near Chicago, where she works with children and adults with chronic medical conditions.  Dr. Taft is also an Assistant Professor at Northwestern University Feinberg School of Medicine, where she worked in the division of gastroenterology’s Center for Psychosocial Research in GI for 8 years. She has published several articles on psychosocial issues for people living with chronic digestive conditions and was part of a landmark clinical trial for Cognitive-Behavioral Therapy (CBT) as a treatment of IBS.

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