Functional bowel disorders are a group of prevalent, chronic conditions that can be disabling and cause considerable suff ering ( 1 ). For over 25 years I have been an advocate on behalf of patients with these disorders, and I have been a patient myself. When I started IFFGD, the International Foundation for Functional Gastrointestinal Disorders, in 1991 few talked about these disorders, and information was lacking among physicians as well as patients. My goals for IFFGD included raising awareness and educating people about these conditions, increasing research investment for the disorders, and advocating on behalf of patients. Many positive changes have taken place over the past 25 years. Nonetheless, critical areas remain to be adequately addressed. Th ese include the stigma attached to bowel conditions, and by extension to those aff ected, and the need for education about the disorders among multiple health-care disciplines. While specialists in gastroenterology have increasingly become well-versed in these conditions, patients still struggle to fi nd the help they need. Few treatments are available and most are marginally eff ective. Th ere is growing interest in understanding the patient perspective of living with one of these disorders and how that may aff ect care. Living with a chronic bowel disorder presents many challenges. Patients need help understanding how to manage their chronic illness experience. Th is process begins at the time of diagnosis with a clear, understandable, and legitimizing explanation of their condition. Patients need information relevant to their daily lives, not only about what is wrong, but also about how the condition will infl uence their lives. Th ey need to know what to expect, especially when symptoms can change over time, or even day to day. For the patient, having a functional bowel disorder means living with a potentially disabling condition that is misunderstood by the public at large, which has unpredictable symptoms, and that the patient oft en cannot explain. Th ey may struggle for years to manage their symptoms before fi nally seeking the help they need. It can be diffi cult for patients to sort through multiple symptoms to provide a clear picture. Th ey may have adapted over time to accommodate their waxing and waning symptoms. Th e process can be so gradual that the connection is unclear until one day they recognize how their symptoms have compromised their life. Th e ways in which symptoms have changed a patient’s normal life can be a measure of severity. Th ese changes, which can be signifi cant, may not be obvious to others. A clinician related a story to me of a patient seeking treatment for bowel incontinence. When asked when her last episode of incontinence occurred she replied, “Over a year ago”. Puzzled, the clinician dug deeper and discovered this patient had avoided an episode of incontinence by rarely leaving her home and staying close to her bathroom. Diet is a common concern. But for many with bowel disorders, this goes much deeper than questions about which foods to eat. Sharing a meal is one of the most frequent and important social activities any of us engage in. Yet, for those with a functional bowel disorder meals can be a time of dread. Symptom onset is oft en associated with eating. When sharing a meal with friends or colleagues, instead of feeling connected, feelings of apprehension and anxiety become the norm. Th is can lead to a breakdown of social bonds. Understanding how the bowel disorder has impacted and changed the patient’s daily life is at the heart of understanding the needs of the person, and how to help address those needs. Clinicians must oft en take the lead to get a true sense of what may be going on with a patient. It is a process for both patient and physician to peel back the layers of what a patient is experiencing to recognize its impact and how best to treat or manage it. Bowel functions are not easily talked about. Describing symptoms may be diffi cult for the patient; more vague than specifi c. Th e words used to describe symptoms may mean one thing to the patient and something else to the physician. Careful communication and clarifi cation of patient terms is important. Th ere is no socially acceptable way to talk about personal bowel habits. Th e symptoms are embarrassing, invisible to others, and poorly understood by nearly everyone. Patients go to great lengths to hide their condition from others. For many this leads to social withdrawal, if not isolation. To the patient illness is based on their lived experiences, not solely on the signs and symptoms ( Figure 1 ). Th at can mean loss of or change in physiological functions, in self-image, or in levels of work, group interactions, personal relationships, and intimacy. Having a chronic bowel disorder places daily challenges on the individual, which add to the burden of their illness. Uncertainty, about