PBC and mental health: Effects, challenges and coping strategies

Photo shows a close-up image of a woman's hands as she engages in a therapy session
Close-up photo of a woman’s hands as she engages in a therapy session
Some PBC patients report high levels of mental distress, depression and social isolation as a result of their diagnosis and symptoms.

The disease burden for people with primary biliary cholangitis (PBC) is closely associated with the severity of symptoms. High rates of mental distress, depression and social isolation have been reported as a result of chronic fatigue and unrelenting severe itching of the skin, also known as pruritus.

Previously known as primary biliary cirrhosis, PBC is a rare autoimmune disease that affects the liver. A chronic disease with no clear cause and no cure, it attacks the bile ducts in the liver. As PBC progresses, the bile ducts are destroyed and the flow of bile is slowed or stalled, scarring the liver and leading to cirrhosis, and in some cases, liver failure.

About 90% of people with PBC are women, most commonly middle-aged. The onset and severity of symptoms can vary, with many people with PBC asymptomatic at diagnosis and during the early stages of the disease. The most common physical symptoms are chronic fatigue and pruritus, as well as abdominal pain, brain fog, joint pain and jaundice.

The toll on mental health and well-being can be debilitating, with anxiety, emotional distress, self-isolation and social and cognitive impairment all reported in people with PBC. Additionally, stress can exacerbate symptoms of PBC, such as fatigue and itching.

Learn more about PBC signs and symptoms

Coping strategies

Anxiety and depression are common in patients with chronic liver disease. This is not only a consequence of the symptoms, but patients have also reported a loss of purpose and an impaired ability to function normally. Worry about disease progression and thoughts of what could happen create stress and anxiety in people living with PBC. Low health-related quality of life is also strongly associated with sleep disturbance, which is common in patients with PBC.

While pharmaceutical treatments such as antidepressants and anti-anxiety medicines are commonly prescribed in people with PBC, natural therapies can also help support well-being.

A mind-body wellness program is a good place to start for learning to manage the symptom burden of PBC in a natural way. This approach encourages learning mediation, breathing exercises and psychology-based management techniques to help reduce the mental, emotional and social impact of symptoms. The American Liver Foundation offers a series of tools and techniques for self-management that focus on emotional and mental well-being.

Light physical exercise is a good source of endorphins and is recommended in people with PBC. Some patients have reported that making a small lifestyle change such as going for a 10 minute daily walk has had a positive effect on their fatigue.