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Mental Health, IBS and Removing the Stigma

Written by: CDHF

Updated: November 14th, 2022

Not only is IBS physically debilitating, but the unpredictable nature of painful and embarrassing symptoms can significantly affect a person’s mental health.

It is an unfortunate reality that there is a stigma surrounding IBS diagnosis. Many people may not take the condition seriously and tend to write off the condition as being ‘all in the patient’s head.’ This has led to an increase in depression and anxieties in persons who suffer from IBS in comparison to those who do not.^{1, 3, 5}

The Stigma Surrounding IBS

This lack of belief in the diagnosis among peers and loved ones, coupled with the chronic nature of the condition and lack of treatment options can leave people feeling lost, alone, confused and frustrated.

It is common for people who struggle with IBS symptoms to feel that their friends and family believe that they are using their condition as an excuse to get out of activities and events. In fact, a study done in 2014 found that more than half of participants felt that they were treated differently by peers, family, friends and colleagues due to their diagnosis.⁶

For many, discussing IBS symptoms can be embarrassing. From a social standpoint, openly discussing bowel movements is often frowned upon, which leads to many IBS patients hiding their diagnosis and suffering from the debilitating pain and frequent bowel issues in silence.

Leaning on a support system is natural and necessary for human beings to feel cared for, loved and accepted, so openly discussing what it’s like to live day to day while managing IBS is necessary to help maintain a healthy mental state.

Mental Health and IBS

To give you an idea of just how much IBS can effect a person’s well-being, check out these alarming statistics:

In a global survey of 1,966 individuals who suffer from IBS, on average patients surveyed said they would give up 15 years of their life to live symptom free.²
14% of surveyed patients admitted they would risk a 1 to 1000 chance of death if it meant living a symptom-free life.²
In another intercontinental survey involving a little over 500 people who suffer from IBS, 11% agreed that when their symptoms were at their peak, they often wished that they were dead.⁷

Most patients admit to feeling stigmatized most by their employers and co-workers followed by their doctors and friends. ⁴

How can I help someone struggling with IBS?

One of the best ways you can help someone who suffers from IBS is encourage them to be open about how they’re feeling, and being there for them when they need someone to lean on. Use the following tactics to help reassure a friend, family member or colleague if you learn that they are dealing with IBS.

10 Tools and Tactics for helping someone with IBS:

Encourage them to confide in you when they’re feeling down. If they’re in pain ask them if there’s anything you can get for them to help, or offer to leave so that they can rest.
Tell them that they have nothing to be embarrassed about and what they’re going through is not their fault.
Let them know that you think they’re brave for confiding in you. It takes a lot of guts to talk about your mental health and ask for help, and even more guts to talk about things like urgency and bowel movements. But it’s important that they do and you’re glad that they did.
Encourage them to have an honest straightforward conversation with their employer about their condition if you know that they have been struggling at work.
If you hear or see someone else making jokes at their expense for spending a long time in the rest room, defend them. Let the person know that their comments are offside and that your friend/family member/colleague suffers from a gastrointestinal disorder and those types of comments are not appreciated.
Offer to go with them to a doctor’s appointment if they have been feeling like they are not being heard by their physician. Sometimes knowing that a friend is waiting for you is all you need to feel more confident at an appointment.
Help to educate other people in your life about IBS, especially mutual friends/colleagues who may not know what it is.
If they’re unable to attend an event due to a flare, don’t pressure them to come and don’t make them feel guilty. Chances are they are already feeling terrible about cancelling. Instead let them know that you understand, and to reach out to you if they need anything.
When they’re feeling well enough, encourage them to accompany you for some light exercise, like a walk for example. Exercise can help reduce stress, which can often trigger a flare.
If you are planning an outing, make sure there are bathrooms readily available.

Dealing with the Stigma

Something as simple as support from a friend can make all the difference when you’re struggling to deal with the stigma around something like IBS. The accompanying side effects of anxiety and depression that come with the disorder can add to even more stress which can aggravate symptoms.

By just being there for someone, you relieve them of those pent up feelings of shame and embarrassment and show them that what they’re going through is nothing to be ashamed of. Quite the opposite, they should feel proud of themselves for continuing to fight and be empowered by knowing that they have the strength to get through each day, despite the obstacles.

References:

Ballou S, Bedell A, Keefer L. Psychosocial impact of irritable bowel syndrome: A brief review. World J Gastrointest Pathophysiol. 2015;6(4):120-3.
Drossman DA, Morris CB, Schneck S, et al. International survey of patients with IBS: symptom features and their severity, health status, treatments, and risk taking to achieve clinical benefit. J Clin Gastroenterol. 2009a;43(6):541-50.
Hausteiner-Wiehle C, Henningsen P. Irritable bowel syndrome: relations with functional, mental, and somatoform disorders. World J Gastroenterol. 2014;20(20):6024-30
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(3):367-74
Lee C, Doo E, Choi JM, et al. The Increased Level of Depression and Anxiety in Irritable Bowel Syndrome Patients Compared with Healthy Controls: Systematic Review and Meta-analysis. J Neurogastroenterol Motil. 2017;23(3):349-62.
Taft TH, Riehl ME, Dowjotas KL, et al. Moving beyond perceptions: internalized stigma in the irritable bowel syndrome. Neurogastroenterol Motil. 2014;26:1026-35.
Törnblom H, Emmanuel A, Goosey R, et al. Understanding Symptom Burden and Attitudes in Patients with Irritable Bowel Syndrome with Diarrhea: Results from a Patient Survey. Gastroenterology. 2017;152(5):S745-S46.