Living with PBC: Managing Symptoms & Protecting Mental Health
Living with primary biliary cholangitis (PBC) often means navigating a complex landscape of symptoms – fatigue, itching, brain fog and joint pain – that aren’t always visible to others. This invisibility can be isolating, creating a disconnect between how you feel and how you’re perceived. It’s a common experience for those with chronic illnesses, and understanding how to cope with these challenges is crucial for maintaining well-being.
“Invisible illness really can be isolating. It can feel like nobody understands,” says Anahli Patel, PsyD, an assistant professor of clinical medicine at Indiana University School of Medicine in Indianapolis and a volunteer for the American Liver Foundation (ALF). Constantly explaining your condition or pushing through activities that have become more hard can contribute to anxiety, frustration, and withdrawal.
Communicating Your Experience with PBC
One of the first steps toward managing the emotional impact of PBC is finding effective ways to communicate how you’re feeling to those around you. Symptoms often fluctuate, making it challenging to convey the unpredictable nature of the illness. Instead of broad statements, attempt providing specific examples.
“If it feels difficult to explain how you’re feeling, sometimes it’s easier to provide examples,” Patel suggests. For instance, explaining that brain fog makes grocery shopping difficult because of memory lapses and resulting frustration can be more impactful than simply saying you’re “not feeling well.” Sharing these specific limitations helps others understand your needs.
Developing a functional scale can similarly be helpful. Assigning a number to your daily functioning – with 10 representing a day when you’re unable to secure out of bed and 5 indicating you’re okay at home but would appreciate a check-in call – provides a clear way to communicate your support needs. This scale can be shared with both loved ones and your medical team.
The Importance of Consistent Treatment and Monitoring
Managing PBC isn’t solely about addressing liver health; it’s also about reducing anxiety and fostering a sense of control. Regular treatment and monitoring are key components of this approach. The primary goals of PBC treatment are to slow disease progression and protect liver function. Your doctor will likely monitor your progress with blood tests measuring alkaline phosphatase (ALP) and bilirubin.
Common medications used to treat PBC include ursodeoxycholic acid (UCDA or ursodiol; Actigall, Reltone, Urso), seladelpar (Livdelzi), and elafibranor (Iqirvo), says K. Gautham Reddy, MD, a professor of medicine and associate chief of gastroenterology, hepatology, and nutrition at University of Chicago Medicine. These medications aim to keep ALP and bilirubin levels within target ranges, easing symptoms like itching and providing reassurance about liver health.
“Even if you have symptoms, the fact that your alkaline phosphatase and bilirubin are better is a extremely good thing,” says Dr. Reddy. When these levels are stable, the risk of serious complications like cirrhosis, the need for a liver transplant, or liver-related death significantly decreases, potentially approaching that of the general population.
Regular checkups are also important, as individuals with PBC are at a higher risk of developing other conditions, such as autoimmune thyroid disease, bone loss, and vitamin D deficiency. Early detection and management of these issues can further support both physical and emotional well-being.
Easing Symptoms Through Practical Strategies
Beyond medical treatment, implementing strategies to alleviate specific symptoms can significantly improve quality of life. For example, managing dry, itchy skin – a common symptom of PBC – can be achieved through simple skincare adjustments. Short, lukewarm baths or showers are preferable to hot ones, which can exacerbate dryness. Using a petroleum jelly-based moisturizer and a humidifier can also provide relief.
Other symptoms can be managed with similar measures. Chewing gum or sucking on a mint can alleviate dry mouth, while artificial-tear eye drops can soothe dry eyes. Discussing potential medications with your doctor is also important; seladelpar is approved to reduce itching, and new IBAT inhibitors are expected to become available soon for managing liver-related itching.
Prioritizing Healthy Habits for Energy and Mood
Fatigue is a significant challenge for many with PBC, impacting both physical and mental health. Adopting healthy habits can help boost energy levels and promote a sense of control. A well-balanced diet rich in fruits, vegetables, and lean protein is essential.
Regular physical activity, even in small increments, can also be beneficial. “If you’re starting out at just five minutes a few times a day, getting your heart rate up can make a difference. And you can build from there,” says Dr. Reddy. Working with a physical therapist can provide guidance and support, increasing confidence and comfort with exercise.
Managing Social Energy and Practicing Mindfulness
Maintaining social connections is important, but it’s also crucial to be mindful of your energy levels. Think of your energy as a limited resource. Pacing yourself – planning less strenuous activities, building in rest time, and spacing out commitments – can help you stay engaged without overexerting yourself.
Mindfulness practices, such as progressive muscle relaxation, meditation, and diaphragmatic breathing, can also help restore energy. Focusing on your breath engages the vagus nerve, shifting the body from a “fight or flight” response to a state of calm. Guided meditations and breathing exercises are readily available online.
Seeking Support and Resources
While family and friends offer valuable support, they may not fully understand the challenges of living with PBC. Connecting with others who share similar experiences can be incredibly helpful. The American Liver Foundation (ALF) offers online support groups, including a Facebook group specifically for people with PBC, and a helpline at 800-465-4837.
Consider consulting a mental health professional. Directories like Psychology Today can help you find a therapist who meets your needs. In some cases, medication may be prescribed to manage mood and related symptoms.
“PBC is a very all-encompassing disease,” says Patel. “It affects all of your biological processes, including your appetite and sleep. It’s important to find ways to take control of the things we can.”
Looking Ahead
Living with PBC requires a holistic approach that addresses both physical and emotional well-being. By communicating effectively, staying on top of treatment, implementing symptom-management strategies, prioritizing healthy habits, and seeking support, individuals with PBC can navigate the challenges of this condition and maintain a fulfilling quality of life. Continued research into new treatments and a deeper understanding of the disease’s impact on mental health will be crucial in improving outcomes for those affected.