Mental Health and Gastrointestinal Conditions

“It’s all in your head!”

“There’s nothing wrong with you.”

“Is it really that bad?”

These are only a few phrases that people living with gastrointestinal (GI) conditions hear time and time again. Part of this stems from the fact that GI diseases and disorders are not visible externally and others find it difficult to believe they exist because they cannot see them. These prevailing attitudes and beliefs can trigger feelings of discredit, shame, guilt, and loneliness. The physical, emotional, financial, and social burdens of GI conditions further worsen these difficulties. They can become overwhelming and lead to mental health disorders, such as depression and anxiety. Feelings of embarrassment, helplessness, and mental health struggles may cause individuals to experience a sense of degradation and loss of self-identity. Those who do not have to live with these conditions might not realize that it’s not always the disease or disorder itself that is so difficult, but rather the related mental health suffering.

Stigmatized conditions can include irritable bowel syndrome, inflammatory bowel disease (Crohn’s disease and ulcerative colitis), gastroparesis, obesity, liver disease, infections such as Clostridioides difficile, and living with an ostomy.

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Jonathan Dugrenier

This article is in memory of Jonathan Dugrenier, known as Jo, (1997-2020) a young man from Quebec whose childhood was normal and happy. He had a knack for humour and enjoyed the company of many friends. Jo also had passion for many things – he had a thrill for life. Whether it be rain, snow, or sunshine, he loved to ride his motorcycle and ATV across town. He was an avid gamer and had a growing interest in computers. He settled into a job he loved and began to map out his future. However, this all changed when he started having symptoms of irritable bowel syndrome (IBS). At the age of 20, painful abdominal gas, bloating, diarrhea, and constipation tormented his daily life. Jo started to withdraw himself from social activities that he used to eagerly take part in. The demands of IBS on his diet led to him losing weight. He was unable to go to work due to the unpredictability of his symptoms and eventually lost his job. He suffered from loss of sleep and a great deal of pain – physically and mentally – and he shared these struggles with his parents who did everything they could to help ease their son’s battle against this condition. His symptoms were overwhelming and relentless, yet he remained thoughtful and considerate toward others. He stopped sharing his pain. Sadly, after three years of struggling, things became so unbearable that Jo took his own life.

Mental health is a difficult topic to address but it is sorely lacking discussion and research in the gastrointestinal community. Individuals living with GI conditions may not know how to address these issues or talk about it with others, or they may not want to at all. Our goal is to raise awareness and inform the public that mental health is a crucial aspect of care for individuals living with gastrointestinal diseases and disorders. We also want to offer insight into the mental health challenges these individuals struggle with and provide ways that friends and family can give support.

The mental health of Canadians may deteriorate further with the physical, emotional, and psychological effects that the COVID-19 pandemic continues to inflict. We need to remain vigilant about mental health, now more than ever.

Stigma

To understand the effects of GI conditions on mental health, it’s important to know about stigma. Perceptions surrounding gastrointestinal diseases and disorders might stem from a lack of public awareness and understanding. In turn, these gaps in education feed social taboos about our digestive systems, such as ‘passing wind’ (flatulence) or bowel movements, which are necessary bodily functions that can be the subject of insensitive humour.

So, what exactly is stigma? In 1963, a Canadian sociologist named Erving Goffman identified this social concept, describing the term as a “situation of the individual who is disqualified from full social acceptance” due to an attribute that an individual has.1 In 2001, researchers expanded this theory of stigma to include an interplay with cultural beliefs, isolation, loss of social status, and discriminatory experiences.2 Today, stigma is commonly understood as a negative set of beliefs or attitudes that result in discrimination. Recently, there has been progress in identifying and combating stigma surrounding obesity.3 Despite advancements in our understanding of GI conditions, research is lagging on the effects of these illness-related stigmas.

Isolation and Withdrawal

Due to experiences with stigmatization, you might avoid talking about your conditions with others. The unpredictability of your symptoms and the unavailability of public bathrooms can also worsen your desire to isolate from social interaction. You might feel the safest at home, within reach of the necessary resources and tools you need to ease your symptoms and away from judgement. Changes in diet, symptoms, and side effects of medications and surgery can also lead to a loss of self-esteem, particularly with body image, inducing you to withdraw yourself further. Social activities, such as eating at restaurants with friends and family, can be a risky undertaking since you may never know if the food you eat will trigger an onset of painful symptoms, such as cramps or diarrhea, or if you might be criticized due to your weight.

However, staying at home is not a solution. You might have difficulties in keeping your job, finding an employer who is understanding and accommodating of your conditions, or going about your day to day life. You might find it heartbreaking to not be able to spend time with your loved ones, such as playing with your kids or going on adventures. You might have grown apart from family and friends due to conflict and misunderstandings of your illnesses.

Studies have found that others tend to stigmatize illnesses that can be hidden, have some variability and unpredictability, or cause a change in one’s appearance.4 With this, it is no surprise that many gastrointestinal diseases and disorders are subject to illness-related stigmatization. You might be able to ‘pass’ in society as a regular person living without physical difficulties and you might be successful in downplaying your symptoms so others can’t see them. Additionally, when you have a chronic condition you might not socialize or go outside when your symptoms are severe, so others don’t truly see what it’s like when you’re too ill. As a result, if you have not been personally affected by these conditions, you might not fully understand what those affected are going through.

Stress

Stress can make it more difficult for your body’s defence mechanisms to fight inflammation. At the same time, stress can also trigger the onset or worsening of symptoms. For instance, stress can be a trigger for diarrhea, repeated urges to urinate, altered bowel habits, and more. These triggers add even more stress, creating a frustrating and viciously unfair cycle. Being stressed might affect your mood and mental health, causing worry, overthinking, and paranoia. Experiencing a traumatic and extremely stressful event can lead to post-traumatic stress disorder (PTSD), which you may develop following episodes of incontinence, such as if you accidentally defecate in a public space. These are only a few ways stress can affect individuals with digestive diseases and disorders. However, by understanding how you respond to stress and the ways that you can try to manage it, the better equipped you will be to recover. Building and relying on support systems can also help alleviate worries and fears.

The Role of Mental Health in GI Conditions

We’ve conducted several surveys and outreach activities among different disease and disorder populations and a common thread throughout is the need for more mental health support.

In our 2016 Canada-wide survey of individuals with irritable bowel syndrome,5 we found that of the 2,961 respondents, 32% said they have a form of mood disorder, 27% suffer from anxiety disorders, and a majority (71%) experience anxiety. Half of the respondents indicated that they experience poor quality of life in an average month due to IBS. Despite the frequency of mental health problems found in our study, other researchers looking at a broad spectrum of GI conditions found that only a few patients receive psychological treatment for IBS.6

In 2018, the GI Society conducted a study7 to identify the unmet needs of individuals with inflammatory bowel disease. Of 432 Canadian respondents, 37% indicated that their ultimate goal in treatment, aside from finding a cure, is achieving a good quality of life. This echoes the results we found from another study on which we collaborated,8 which focused on those who had inflammatory types of arthritis, psoriasis, and inflammatory bowel disease (primarily Crohn’s disease and ulcerative colitis). We found that of 636 respondents, the main concerns were (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all four narratives.

Clearly, we need to ensure provision of more mental health support tailored to address the specific needs of those who have gastrointestinal and liver conditions. Other studies also recommend screening for psychosocial issues and mental health conditions to ensure timely referrals to a psychiatrist.4 This is crucial since those who struggle with mental health also tend to experience worsening of symptoms as their mental health diminishes. It is also possible that the medications you take and any invasive testing or surgical procedure you undergo could negatively affect your mental health.

7 Tactics that You Might Find Helpful

  • 1. Support Groups

    Dealing with a chronic medical condition is not easy and support groups offer a safe and comfortable forum to express yourself, your worries, and fears with others who share the same condition and will likely understand what you are going through. They allow individuals to share advice and develop meaningful bonds with others. Participants who attended our support group meetings have found it to be extremely helpful and fulfilling to discuss their illness with others, even finding joy and humour in the support they’ve received.

  • 2. Journaling

    Writing in a journal is an effective psychological therapy and can significantly improve your experience of living with various diseases and disorders. Expressing emotions can help you think about them in a different way and gain insights into your condition that you might not have previously realized. These may be identifying trigger foods and situations, the best times in the day that your body digests food or tolerates medication, and more. Having renewed perception helps you prepare for the unexpected and may give you a better sense of control over your body and symptoms.

    To help you with your writing journey, we’ve created a three-month Digestive Health Journal that you can use to track your diet, lifestyle, and symptoms.

  • 3. Healthy Breathing

    When you’re stressed, you tend to take more frequent, shallow breaths, which means that your body doesn’t get enough oxygen to fully relax. You might notice that during stressful times, you naturally find relief when taking a deep breath.

    You can become a better breather: breathe slowly and deeply from your nose and hold your breath for a few seconds. Let it out through your mouth. Repeat!

  • 4. Exercise

    Exercise offers well-known relief for tension and stress. It stimulates the production of serotonin, also known as the happy chemical. However, as with most things, enjoy activity in moderation. There are health benefits for many GI conditions, but strenuous, high-impact exercises might actually induce symptoms for such conditions as irritable bowel syndrome, inflammatory bowel disease, and gastroesophageal reflux disease (GERD). Take caution and increase exercise slowly. Determine your body’s tolerance as you go.

  • 5. Practice Self-Love

    Take time at least one day out of the week to do one activity you’re passionate about or enjoy doing. Maybe even spoil yourself by shopping for an item you’ve really wanted for a while. Listen to music that makes you feel good and confident. At the same time, give yourself permission to experience everything you feel. It’s okay to cry once in a while if this is the best way for you to let your feelings out.

    You might fall into a common trap when you get very sick, which is that you might forget that you were okay only a little while ago and will probably be okay again in a few days. So, try telling yourself, “no matter what happens, I can manage in this moment.”

    Recognize that sometimes you might be too sick to make even a minor effort. That’s okay. Take each day one day at a time. Be forgiving and kind to yourself.

  • 6. Choose Foods Wisely

    Eating a well-balanced diet and making sure that you receive the right amount of nutrition are key to both good physical and mental health. Certain foods might increase your stress level, so practice mindful eating habits and be aware of their potential effects on your mood and health. When we are feeling stressed or experiencing strong emotions, we might want to eat a ‘comfort’ food, but this could be an item that will trigger symptoms! Having a disease of the digestive tract makes navigating food options so much more complex, so it’s worth consulting a registered dietitian who can help you figure out a safe and nutritious diet.

  • 7. Therapy

    You can reach out to family and friends in your support system; however, the best step is to see a professional therapist who can offer ways to understand and address your psychosocial stresses and mental health disorders. Ask your physician which type of mental health specialist is right for you.

3 Tactics for Helping Others

  • 1. Communication

    We must be aware of how we listen and respond to make sure that our words and actions don’t end up being hurtful and ignorant to those we are caring for.

    Examples of behaviours to avoid when communicating:9

    • One-Upping: “That’s nothing. Wait until you hear what happened to me.”
    • Story-telling: “That reminds me of a time when…. Did I ever tell you about…?”
      • Minimizing: “Cheer up. Don’t feel so bad. Think of others who are much worse off than you are. Move on.”
    • Judging: “I think it’s time you pulled yourself together.”
    • Rejecting: “I don’t want to hear about this again.”
    • Fixing: “Let me tell you what you have to do here. What needs to happen is this.”
    • Denying: “Oh, come on, that’s impossible. How do you know that, anyway?”

  • 2. Understanding

    To understand what our loved ones are going through, we need to take the time to research and learn more about their condition. Don’t rely on them to give you the information by constantly asking them to tell you what it’s like, especially since some people feel uncomfortable when sharing personal aspects of their lives. Instead, seek the information yourself. We have abundant resources and information on our website.

  • 3. Simple Acts of Kindness

    Sometimes, it’s the little things that can bring joy to their day. You can offer to grab their medications, buy them a meal, or even accompany them to their appointments.

    Lastly, don’t give up on your loved ones. They need you, even when it doesn’t seem like they do.

Outlook

Sadly, Jo Dugrenier could not get out from under the heavy burden of living with a chronic disease.  Thousands more are struggling with their mental health every day.

Mental health is an important and urgent public health issue that needs the collaborative effort of the healthcare systems, governments, workplaces, communities, patient organizations, and other stakeholders. We still have a long way to go in addressing this topic among individuals living with gastrointestinal conditions. Through advocacy, awareness, and research, we will work to promote further understanding among the public and end stigma and social taboos. We hope to ease the suffering of individuals affected by these diseases and disorders.

We sincerely thank Jo’s family who, in their grief, have given us the opportunity to share his story and bring a voice to individuals with chronic illnesses and mental health struggles who are too deeply affected to tell us directly what they are going through. If you or someone you know would like to share their story, please contact us.

If you are experiencing a crisis, you can call the National Suicide Prevention Support Line at 1-833-456-4566. For Quebec residents, please call 1-866-277-3553.

If you have a child or know of one that needs support, the Kids Help Phone offers access to a professional counsellor 24/7 at 1-800-668-6868.

The Government of Canada launched a program to help Canadians experiencing mental distress due to the COVID-19 pandemic. These can be feelings of isolation, substance use concerns, financial and employment uncertainty, and more. You can get direct support to educational resources and free counselling via text. For youth and young adults, text WELLNESS to 686868. For adults, text WELLNESS to 741741.

First published in the Inside Tract® newsletter issue 215 – 2020
1. Fitzpatrick M. Stigma. British Journal of General Practice. 2008. Apr 1;58(549):294.
2. Link BG, Phelan J. Conceptualizing stigma. Ann Rev Sociology. 2001;27:363-821.
3. Warton S et al. Obesity in adults: a clinical practice guideline. Canadian Medical Association Journal online at https://www.cmaj.ca/lookup/doi/10.1503/cmaj.191707
4. Taft T et al. A systematic review of disease-related stigmatization in patients living with inflammatory bowel disease. Clinical and Experimental Gastroenterology. 2016:9. 49-58.
5. GI Society. IBS Survey Results. GI Society page. Available at: https://badgut.org/ibs-survey-results/. Accessed 2020-08-11.
6. Shah et al. Psychological disorders in gastrointestinal disease: epiphenomenon, cause or consequence? Annals of Gastroenterology. 2014;27(3):224-230.
7. Gray JR et al. The Unmet Need of Inflammatory Bowel Disease Survey Results. GI Society page. Available at: https://badgut.org/survey-results-ibd-unmet-need/. Accessed 2020-08-12.
8. Macdonald et al. Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study. Journal of Participatory Medicine. 2018;1094):e10815.
9. Claire Maisonneuve. Want to Communicate Better? GI Society page. Available online:  https://badgut.org/information-centre/a-z-digestive-topics/communicate-better-with-your-gut/. Accessed 2020-08-11.
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