Being diagnosed with a rare or chronic illness can come with a heavy emotional and psychological burden. When you first receive a diagnosis, you might be wondering what it means for your life, your relationships, and your career. That then moves into daily life and challenges: how severe will symptoms be, and when will they appear?

In reporting from WebMD, Damian McNamara discusses this emotional burden in relation to people living with inflammatory bowel disease (IBD), which comprises ulcerative colitis (UC) and Crohn’s disease. This comes after a survey performed by the American Gastroenterological Association (AGA) showed that people with IBD are experiencing heightened rates of depression and anxiety than they did six years ago. In fact, 36% of people with IBD say that they struggle with anxiety (compared to 19% of the national population) and 35% say they struggle with depression (compared to 8% of the national population). Unfortunately, there seems to be a disconnect between patient perspectives and provider perspectives; doctors report that patients are receiving adequate mental health care.

What is Causing Rising Anxiety and Depression?

Some of these reasons that have been identified include:

• Difficulties in holding conversations. It can sometimes be hard or scary to talk about what you are experiencing when you live with a chronic illness. There are days when you simply don’t feel well, or days when you’re not able to accomplish what you wish that you could. Some individuals falsely believe that speaking with friends and family about their issues, or even bringing up relationship or career problems with their doctors, makes them a burden. Similarly, doctors may feel uncomfortable bridging topics such as sexuality (or sexual relations while living with a chronic illness or ostomy bag).
• Disease management. Outside of handling their social and career needs, people with IBD face many physical issues or needs. It is important to stay hydrated, reduce alcohol and caffeine intake, and practice consumption with moderation. On top of that, medication requirements, frequent doctor visits, and other needs make it difficult to manage the entirety of the disease process. It can be overwhelming at times.
• Disease unpredictability. It can be difficult to determine how IBD may progress – or when symptoms may appear. This can make it difficult for those affected to go on vacations, visit family, go on dates, or even perform seemingly simple errands like running to the grocery store. Not knowing when symptoms may arise, or when bathroom urgency may occur, can spark anxiety.
• Racial/ethnic issues. Within the survey, people of color noted that they felt that their racial or ethnic background changed their treatment journey. They found that this made it more difficult to participate in clinical studies, find equitable access to care or treatment, or get the same level of care from their providers.

If you are facing any of the above issues, you are not alone. The AGA created My IBD Life as a resource to help people with IBD manage the emotional and psychological aspects of living with this disease.

An Overview of Inflammatory Bowel Disease (IBD)

Inflammatory bowel disease (IBD) refers to a group of inflammatory conditions (ulcerative colitis and Crohn’s disease) that affect the digestive tract. The exact cause of the inflammation is unknown. Some believe that IBD results from immune malfunction; others believe that heredity plays a role. There are also a number of triggers that can exacerbate or worsen IBD: younger age, Ashkenazi Jewish heritage, smoking cigarettes, nonsteroidal anti-inflammatory medications, diet, stress, and living in a northern climate or industrialized country. Symptoms and severity both vary based on specific disease subtype, as well as from person-to-person. Potential symptoms include:

• Fatigue
• Abdominal pain and cramping
• Bloody stool
• Fever
• Anemia (low red blood cell count)
• Diarrhea
• Appetite loss
• Bleeding ulcers
• Unintentional weight loss
• Blood clots (complication)
• Uveitis (complication)
• Colon cancer (complication)