The Social Impact of IBS

The Psychological Toll of IBS

Starting with the diagnosis process, IBS has a significant negative impact on patients’ lives. The unpredictable, persistent, and diverse nature of IBS symptoms and lack of understanding on the cause of IBS means the diagnosis journey is ridden with self-doubt. Despite being the most commonly diagnosed condition by gastroenterologists and one of the most frequently seen conditions by primary care physicians (PCPs), the full impact and prevalence of IBS is likely under-reported in the healthcare system [2]. The Rome IV criteria for IBS, last updated in 2016, use a symptom-based criteria for diagnosis. Awareness of these criteria by physicians is limited, and the criteria are sometimes criticized as too complex to use in clinical practice [3].

Many patients with IBS feel they are not taken seriously by healthcare providers, while others may not report on their condition altogether. Once patients do seek medical support, it can take an estimated four to six years to receive a diagnosis of IBS, during which patients often try a range of self-management techniques and feelings of frustration increase [4-6]. Following diagnosis, finding effective, evidence-based treatment and support can be a time-consuming, costly and socially isolating experience [4,5].

Various studies have assessed the negative impact IBS has on patients’ lives. A striking report revealed that a majority of patients would give up 10–15 years of life expectancy for an instant cure for their IBS [6]. In another, patients expressed acceptance of a median risk of sudden death of 1% if a medication could cure their IBS symptoms [1]. While strides have been made in recent years to reduce the stigma of IBS, feelings of stigmatization, even from healthcare providers, persist and are associated with depression, anxiety, decreased self-esteem, and lower quality of life, as well as negative clinical outcomes [7].

Daily Activities and Social Impact

IBS symptoms place a significant burden on daily living, affecting everything from patients’ physical wellbeing and their social and working lives to relationships and psychological health. The unpredictability of symptoms makes planning daily activities, social events and travel challenging, which contributes to high levels of overall stress. Common emotional experiences expressed by patients stem from an inability to predict symptoms and an estimated 81% avoid situations where there will be no nearby bathroom [8]. Specific perceptions and feelings expressed by IBS patients include ‘not being in control’, ‘not being able to trust their bodies’, ‘invasion of privacy’ and ‘loss of dignity’.8 Those with IBS restrict their activities an average of 73 days per year [6]. Further, the majority of IBS-D patients experience intermittent symptoms 8-17 days per month and those with IBS-C experience symptoms for an average of 10.5 days per month.8

Many patients also express a lack of support from friends, family members, employers and even their healthcare providers.9 Feelings of embarrassment around symptoms, both because discussing symptoms feels taboo and because IBS is not always taken seriously, are also common [9]. Sadly, a quarter of patients agree with the statement that, “having IBS-D stops me enjoying life” [10].

Work Productivity, Relationships & Financial Burden

IBS unfortunately also impacts work performance and relationships. Patients with IBS are twice as likely to take time off work and are associated with higher rates of absenteeism and impaired work performance. This translates to an average of 2-3 days of missed work per month due to IBS symptoms and an interference with productivity and performance an average of nine days per month [8]. Almost half of all IBS patients report missing work or school due to their symptoms [11]. 

IBS also affects intimacy and can strain personal relationships [12]. Nearly two-thirds of women with IBS report painful sexual intercourse (dyspareunia) and avoiding sexual encounters due to IBS.9 Romantic partners can also feel frustrated or resentful about the restrictions IBS imposes on their daily lives. For single patients, IBS symptoms can also make it difficult to form new relationships, which can exacerbate feelings of loneliness and isolation.

The financial burden of IBS is also significant, especially as patients try a multitude of interventions to understand which, if any, interventions help control symptoms. Patients often try multiple over-the-counter (OTC) treatments and alternative therapies, sometimes out of dissatisfaction with conventional medical therapies [13]. An estimated 15-43% of patients pay out-of-pocket expenses for treatment to address their symptoms, though many alternative therapies they pursue have limited evidence or efficacy [14].  And while many lifestyle and dietary interventions, including the low FODMAP diet, are effective for symptom management, they can be complex, restrictive, and financially burdensome [15].

Mental Health Concerns of IBS

The isolating and burdensome nature of IBS management increases risk for feelings of depression, shame, stress and anxiety. Up to 76% of IBS patients do not feel ‘normal’ and 64% feel ‘self-conscious’ about how they look [9]. IBS-specific stress and worry around symptom onset, certain foods and social situations, can increase isolation, anxiety and even contribute to sleep disorders [16]. Conversely, depression and anxiety can make IBS symptoms worse, creating a vicious cycle.

Patient-Centered Care 

To minimize the social impact of IBS, healthcare providers must take care to develop a plan that targets the multifaceted ways patients’ lives are affected by IBS. From dietary changes and stress management techniques to support groups and evidence-based resources, an effective treatment plan must be comprehensive and patient-specific. Despite what may seem like a grim outlook, appropriate IBS treatment can improve health-related quality of life [17].