The symptom burden of primary biliary cholangitis (PBC) can significantly affect the quality of life of people with PBC and their families. Learning to navigate all aspects of life is part of living with a chronic disease, and by being proactive about your health and open about the associated challenges, you can help maintain a sense of normalcy and focus on what’s important.
What is PBC?
PBC is a rare autoimmune liver disease that has no exact cause and no cure. In most cases, it progresses slowly, with medical treatment helping to slow its advance. The small bile ducts within the liver become inflamed and start to break down and will eventually be destroyed. This means bile doesn’t flow properly, and it builds up in the liver. This, in turn, scars the liver tissue and impairs liver function. Fibrosis and cirrhosis follow and, in the worst cases, liver failure.
Women from 35 to 55 years of age are the most commonly affected, meaning diagnosis before or during the period of their lives that is often occupied by raising a family. At diagnosis, most people are asymptomatic, and this can continue for a number of years. When symptoms do occur, they can include fatigue, itchy skin, brain fog, joint and stomach pain and jaundice.
The severity of symptoms varies from person to person and throughout the different stages of PBC, but in people living with PBC these symptoms can lead to depression, social isolation and emotional stress. Lifestyle changes, a healthy diet and avoiding stress can all help manage symptoms.
Tips for balancing your health and family time
Making a priority of your health and well-being will only benefit your family. By taking care of yourself, you will be better equipped to take care of them.
A nutritious diet, regular physical exercise and taking part in wellness activities such as yoga or meditation will help manage your symptoms and improve your state of mind. Keep in mind that your physical, emotional and mental state will impact your daily family life and associated activities and relationships.
Speak openly about your disease with your family. Explain why you are tired and itchy and how these symptoms impact your daily life. Your children will respond better to honest conversations.
Be realistic about your limitations. Be honest with yourself about what you can and can’t do. If you push yourself too hard this will negatively impact your health and may lead to symptom flare ups.
Ask for help. Prioritize family time over household chores and tasks. Delegate where you can, ask for support from friends and extended family with cooking or laundry needs and outsource jobs such as cleaning.
Let go of the guilt. You will live better if you stop the blame game. PBC is no one’s fault, and certainly not yours.
The shared experience of managing a chronic disease will come with its fair share of challenges. It will also create stronger bonds within your family
