Eight years ago, Marcia, a retired clergy member, received an unexpected diagnosis — primary biliary cholangitis (PBC), a chronic autoimmune liver disease. Although the diagnosis took Marcia by surprise, it explained the abnormal results of her routine bloodwork, which revealed the presence of antimitochondrial antibodies (AMAs). A liver biopsy confirmed PBC, a condition that gradually damages bile ducts. Doctors determined that Marcia’s PBC was in its early stages.

Marcia’s initial treatment included bile acid medications, which are often prescribed to slow the progression of liver damage in PBC. Her liver numbers gradually stabilized, but it took years for them to fall within a healthier range. Recently, Marcia began trying a newer medication, though she said it’s too early to know how well it’s working.

Learning More About PBC

When she was first diagnosed, Marcia felt as though there was too much complicated medical information to take in. “I felt very ignorant about how the liver functions and my disease,” she said. Eager to educate herself, she attended a national PBC conference in Houston. However, as someone newly diagnosed, she found the material dense and complicated. “I was overwhelmed,” she said.

Marcia also looked for other educational resources, such as online articles, but still found it hard to access clear, understandable explanations of PBC. “I read online whatever I can find. I’ve asked medical folks, but they dumb it down so badly or dismiss the request with ‘All I have are medical journals,’” she said.

Adjusting to a New Lifestyle With PBC

Living with PBC requires Marcia to be mindful of her health and daily habits. She pays close attention to medications because certain drugs can be harsh on the liver. After a difficult experience with an antibiotic that temporarily worsened her liver function, Marcia learned the importance of making sure all her health care providers know about her condition when they’re recommending new treatments.

Dietary changes have also played a role in managing her PBC. “My diet is almost no fat, and I’m trying to avoid preservatives and processed foods,” she said. Although changing her diet won’t cure PBC, choosing certain foods and avoiding others may support her liver health and improve her overall well-being.

Understanding Family History and Finding Support

Marcia’s family history has shaped her journey with PBC. In 1980, her mother died of cirrhosis at age 50. At the time, autoimmune liver diseases like PBC weren’t widely understood, and her mother’s condition went undiagnosed. “No one knew anything about autoimmune diseases,” Marcia said. At 70, she takes pride in managing her condition and living a fulfilling life.

For support, Marcia relies on friends who, while not familiar with PBC, offer encouragement and help when needed. “I have some friends who don’t understand it but are willing to help,” she said.

Offering Advice About Living With PBC

PBC is a rare autoimmune condition that primarily affects middle-aged women, according to Mayo Clinic. The disease occurs when the immune system mistakenly attacks the bile ducts in the liver, leading to inflammation and scarring over time. Common symptoms include:

• Fatigue
• Itchy skin
• Jaundice (yellowing of the skin and eyes)

Although there’s no cure for PBC, medications can slow its progression, help manage symptoms, and improve liver function.

For people newly diagnosed with the condition, Marcia’s advice is simple but important: “Be gentle with yourself. It’s not your fault.”

Embracing Life in Retirement

Today, Marcia focuses on the activities that bring her joy: “I’m retired and loving it.” A music lover, she now sings with a local chorus and values the sense of community it provides.

Looking back on her life, Marcia reflects on the challenges she has overcome, including her upbringing in the Midwest with two parents who had alcoholism. She left home early for college and later felt drawn to seminary after her mother died. What began as a spiritual struggle led to decades of work as a clergy member, serving congregations across several states.

Now living in Florida, Marcia remains grateful for the life she’s lived and the lessons she’s learned. Although living with PBC hasn’t always been easy, she faces it with resilience and the same dedication she brought to her career and community.

Connect With Others Who Understand

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, more than 1,700 members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.

Have you been diagnosed with PBC and relate to Marcia’s story? What changes have you made to manage your condition and symptoms? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.