More than half of people with IBS believe that they are treated differently because of their IBS.1 Stigma occurs when society labels an individual as abnormal.1 Stigma can be something you experience, perceive, or internalize.2
Experienced stigma: Bias or prejudice against the stigmatized group from an outside group.
Perceived stigma: An individual senses discrimination against her/him from others.
Internalized stigma: An individual absorbs and believes certain stereotypes about her/his condition.
Dealing with other people’s perception that IBS symptoms are self-inflicted.
Dealing with other people’s perception that IBS is all in your head.
Stigma is not trivial. It can interfere with getting the medical help or social support you need. It can make it difficult for you take care of yourself, and it has been shown to decrease your health-related quality-of-life.2
Why is there a stigma about IBS?
There are certain disease characteristics that lead to stigmatization, and IBS hits many of them.1 Bowel symptoms are inherently difficult to discuss, and in IBS, the symptoms are severe, unpredictable, and uncontrollable. Functional disorders are associated with stigma from others, who may question the legitimacy of your illness.3 That IBS can be hidden from friends and coworkers may lead to feelings of isolation and social disruption.1
Who makes you feel stigmatized?
Most likely, you already know who makes you feel the stigma of IBS. In fact, the IBS in America survey showed that 92% of individuals with IBS wished that other people understood the impact of IBS on their lifestyle.4
Co-workers and employers were the greatest source of stigmatization in one study, followed by health care providers and friends.1 Having IBS makes work a challenge, whether it is needing to leave a meeting suddenly, being unable to eat at work events, or needing time off.1 Patients report feeling stigmatized by their health care providers, who perhaps are misinformed about functional bowel disorders. In the IBS in America survey, 40% of people reported choosing self-care after being dissatisfied with their health care provider.4
Should you talk about IBS?
You are the best judge of when to disclose your illness to the people around you.
Talking about your IBS might reduce psychological stress and improve relationships, in some cases.1 It may lessen your feelings of isolation to find people to whom you can relate. Indeed, an estimated 10% to 25% of the population has IBS, so chances are that you know someone else with IBS.5
There may be benefits of disclosing your condition to your employer. In particular, you may be able to adjust your work situation to provide the flexibility you need.
It is important to advocate for yourself with healthcare providers. You know your illness better than anyone. Your healthcare provider is your partner in managing your IBS, and you have the final say in whether a treatment plan is working. If you feel stigmatized by your provider, it may be time to transfer your medical care elsewhere.
Jones MP, Keefer L, Bratten J, et al. Development and initial validation of a measure of perceived stigma in irritable bowel syndrome. Psychol Health Med. 2009;14:367-374.
Taft TH, Riehl ME, Dowjotas KL, Keefer L. Moving beyond perceptions: internalized stigma in the irritable bowel syndrome. Neurogastroenterol Motil. 2014;26:1026-1035.
Taft TH, Keefer L, Artz C, Bratten J, Jones MP. Perceptions of illness stigma in patients with inflammatory bowel disease and irritable bowel syndrome. Qual Life Res. 2011;20:1391-1399.
Health Union. Irritable bowel syndrome patients often go without medical care and self-treat [press release]. June 29, 2016. Accessed July 25, 2016 at: https://health-union.com/news/ibs-patients-often-go-without-medical-care-and-self-treat/.
Canavan C, West J, Card T. The epidemiology of irritable bowel syndrome. Clin Epidemiol. 2014;6:71-80.