If you live with primary biliary cholangitis (PBC), there’s no substitute for good communication with your doctor and care team—even more so if you don’t fit the mold of a typical person with PBC. Whether you’re older or young, male or female, it’s important to know that clear, open dialogue can help you make more informed choices about your health. But you can’t simply be a passenger—you have to take an active role in steering the conversation.
Better Communication, Better Health Outcomes
Your doctor can help you better if you provide more detailed information. Even if you’ve felt unheard in the past, it’s crucial to ask questions, express your wishes, and engage in a conversation. Here’s why:
- Understanding the Impact: Your doctor and care team need to hear about your symptoms and how they affect your daily life. It’s not just about the lab results. It’s about you as a whole person. Learn how to prioritize the whole you.
- Agreeing on Treatment Goals: Your doctor and care team should understand your treatment goals. Are you aiming for symptom relief, better day-to-day living, or slowing disease progression? Communicating your priorities is key to effective treatment planning.
- Confidence in PBC Management: Everyone wants to be sure they are being treated by someone who is experienced and confident about managing PBC. If you ever feel unsatisfied with the way things are going, it’s okay to seek out different opinions, so you can be confident in your treatment plan.
5 Ways to Prepare for a More Productive Conversation
Open, productive dialogue doesn’t just happen—you have to do some preparation. Here are 5 simple things you can do to make conversations with your doctor and care team more productive:
1. Write It Down: Before your appointment, have a record of your symptoms, concerns, questions, and goals. Having a written list ensures you won’t forget important details during your limited time together. You can use a journal or the notes app on your phone to track your symptoms. Or try using your phone to record videos of yourself describing your most challenging symptoms in the moment. You can play this “video diary” during your next visit.
2. Be Open: Don’t hold back. Be honest and specific about your experience with PBC—even if it seems minor or if you think there’s nothing that can be done. Small details can often open the door to positive change.
3. Ask Questions: It’s your right to ask questions about your condition and treatment options. A well-informed patient is an empowered patient. Here’s a couple of questions you can consider asking: What does success with my current treatment look like? How long should we wait to see if treatment is working?
4. Seek Clarity: If you feel confused about any complex medical terms used by your doctor, don’t be embarrassed to ask for an explanation. It’s important to fully understand your healthcare plan. You can always talk to your nurse, nurse practitioner, physician assistant, or pharmacist if that makes you feel more comfortable.
5. Discuss Lifestyle: Ask about lifestyle choices that could help make your PBC easier to manage, such as dietary adjustments or exercise routines.
Your Voice Matters
In your journey with PBC, remember that you are not a passive passenger. Your voice, your concerns, and your goals matter. You want to be sure that your doctor and care team understand what you’re going through and will work with you. Together, with a proactive and empowered approach, you can do your part in working toward an improved everyday life.
This information is not intended to be medical advice. Any medical concerns or questions regarding PBC should be discussed with your doctor.
