What is Inflammatory Bowel Disease?
Inflammatory Bowel Disease (IBD) describes a group of conditions, the two main forms of which are Crohn’s disease and ulcerative colitis. It is an autoimmune disease that causes the body to attack itself, leading to the inflammation of all or part of the gastrointestinal tract.
Approximately 10 million people worldwide have IBD, including 250 000 in Canada. One Canadian is newly diagnosed with IBD every hour.
There is no cure, no known cause, and little public understanding of the pain and chronic suffering with which IBD patients cope every day of their lives.
What is stigma?
Stigma is a Greek word that originally referred to a type of marking that was cut or burned into the skin of slaves, criminals or traitors in order to visibly identify them. These individuals were to be avoided, particularly in public places. The influential sociologist Erving Goffman explained stigma as a process by which the reaction of others spoils normal identity. People who have been stigmatized feel as though they are transforming from a whole person to an undesirable and tainted person.
Stigma and IBD
In a recent study of patients with IBD, 84% perceived stigma from their peers, significant others, colleagues and physicians. Several more studies confirm that people living with Crohn's and colitis have great concerns about how others see them, feel different than others, feel a great deal of shame associated with their disease, and feel discredited, including by medical providers.
It can be difficult for those who are not living with an invisible and chronic illness to comprehend the extent to which it can interfere with a person’s life and sense of self. It is common for patients to report that their loved ones and doctors do not adequately understand or validate their experiences. Therefore, most patients living with IBD do not disclose their illness to others. They feel embarrassed and ashamed of their symptoms. This often leads to social withdrawal and isolation.
Patients with IBD often feel misunderstood, because there is so little public knowledge of this disease. Many people confuse it with irritable bowel syndrome or celiac disease. Patients report that people believe that they are exaggerating their symptoms, or do a quick Google search and attempt to offer them advice on something that these patients have been grappling with for years. The truth is that we do not know what causes IBD to develop. Currently, researchers believe that Crohn’s and colitis are caused by a combination of genetics, environmental factors and abnormal immune system responses. There is no known cure at this time. This confusion leads to stigma.
Individuals with IBD often face negative attitudes from employers. Academic and school settings also present many challenges for youth diagnosed with Crohn’s and colitis. In one study, 50% of students reported that their teachers were unsympathetic towards their illness.
Being stigmatized by ones peers, doctors, employers and teachers is devastating. But something that is even more detrimental is when patients begin to stigmatize themselves. Internalized stigma occurs when a patient incorporates these stigmatizing beliefs and attitudes into one’s sense of self. Rather than rejecting them as false, oftentimes patients apply these negative attitudes and stereotypes to themselves. They begin to blame themselves for their symptoms and illness. Patients believe that they are damaged, tainted, and no longer valuable members of society.
Stigma causes people to feel ashamed for something that is out of their control, and prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. Stigma experienced by IBD patients is associated with many negative outcomes, including: increases in psychological distress, decreases in quality of life, reduced medication adherence and decreased self-esteem. Our physical and mental health gets worse when we are stigmatized, either by others or by ourself.
How to Overcome Stigma
This paints a pretty grim picture, but there is hope! The first step to fighting against stigma is educating yourself and others. Learn more about what it is like to live with Crohn’s and colitis - physically, mentally and emotionally. If you are a patient and feel comfortable doing so, speak to others about your experience with IBD. Spread awareness by courageously sharing your story and struggles with others. Another way to fight stigma is to encourage equality between ‘physical’ and ‘mental’ illness. The truth is that our health and well-being cannot be neatly divided into these two categories. Speak out about all forms of stigma and discrimination whenever you get the opportunity.
Another important step to combating stigma is to notice if you stigmatize yourself for your disease and symptoms. It is incredibly important to learn how to value and care for yourself. If you notice that self-stigma is creating self-doubt and shame, seek help from loved ones or a mental health professional. It is very easy to allow this disease to control your life and to fall into social withdrawal and isolation. However, there are many resources available to you; never stop advocating for yourself and your needs. Fighting against internalized stigma is difficult work, but it is worth it. I encourage you to choose empowerment over shame, and never allow this disease to dictate how you feel about yourself. You are more than this disease. You are valuable and whole.
