How to support a loved one with fatigue from PBC

Photo shows a woman experiencing brain fog at work/Getty Images
Courtesy of Getty Images
There are practical ways to support a loved one experiencing chronic fatigue.

Most people living with primary biliary cholangitis (PBC) experience chronic fatigue. It is the most commonly reported symptom, followed by pruritus (itchy skin). While the symptom burden of PBC can mean poor sleep, fatigue is not the same as feeling tired: chronic fatigue is long-term physical and mental exhaustion. Taking the time to understand fatigue and offering support can help your loved one manage this often debilitating symptom a little more easily.

Understanding fatigue in PBC

Chronic fatigue can impact all aspects of daily life in people living with PBC, impairing their ability to function normally at work and at home. It can be overwhelming, and not having the energy for a full day of work or to meet up with friends can easily lead to feelings of social isolation and depression.

In PBC, fatigue stems from damage to the liver, as well as changes in brain activity caused by the autoimmune nature of the disease. It can be exacerbated by co-existing health conditions such as anemia, celiac disease, type 2 diabetes, heart failure and renal failure.

Fatigue has a physical, mental and emotional impact:

  • Physical heaviness: Fatigue can make your loved one feel physically exhausted or drained, with no energy.
  • Brain fog: Fatigue slows down cognitive function, affecting memory and concentration.
  • Low mood: Your loved one may feel less motivated to socialize, which can lead to depression. Living every day with an invisible disease that others often don’t comprehend can also, understandably, impact mood.

Read more about PBC treatment and care

There are practical ways in which you can support a loved one experiencing chronic fatigue, as well as other symptoms of PBC. Though these tips can help, family and friends need to understand that PBC fatigue isn’t something solved by a few extra naps or a restful weekend — it is a long-term symptom of a chronic disease.

Listen with empathy: Regularly ask how your loved one is feeling, and be prepared to respond compassionately.

Offer validation: Recognize that PBC fatigue isn’t the same as feeling a bit sleepy: don’t say that you feel tired too, or suggest they’ll feel peppier after a cup of coffee.

Suggest talking to a counselor: Professional support is essential. Mental well-being can suffer as a result of chronic fatigue, with feelings of frustration and emotional exhaustion commonly reported.

Encourage regular physical activity: Low-impact physical activity on a regular basis can help boost mood and improve energy levels.

Run errands, help out: Offer to help with tasks that are physically tiring or that require extra concentration.

Help them get rest: Sleep disturbances are common in PBC and fatigue worsens throughout the day, so an afternoon nap can help with energy levels later in the day. Plan some downtime when you’re spending the afternoon together, or offer to watch the kids or walk the dog while they rest.

Promote self-care: Living with chronic fatigue is a daily struggle; helping your loved one actively take time for self-care can help them cope with the often debilitating consequences. Even small gestures like showing up with a healthy dinner and a funny movie might go a long way.

Sign up here to get the latest news, perspectives, and information about PBC sent directly to your inbox. Registration is free and only takes a minute.