Living with primary biliary cholangitis (PBC) can feel like carrying a hidden burden, but it doesn’t have to. Sharing your PBC journey is not about passing on a heavy load—it’s about inviting understanding, empathy, and support from others into your life. Here are some ways to get started.
1. If you’re struggling to start the conversation: it helps to choose the right moment—ideally when you and your loved ones can have a private, uninterrupted conversation. You may also want to consider joining a support group together. Conversation is often easier when there are others who can help get the ball rolling.
2. If you’ve tried to explain PBC, but others still don’t get it: try letting them drive the discussion. Encourage your loved ones to ask you questions about what they don’t understand. If you need help telling your loved ones how PBC and its symptoms affect your daily life, you can also share this article or others about PBC.
3. If you are worried that you’re burdening others: remember honesty is always best. Asking for help can be hard because we value our independence. Just know that your condition does not make you a burden. Let your loved ones know when you need help. You may be surprised how eager people are to pitch in when you need some support.
4. If you have trouble expressing your needs: instead of asking for help aloud, try writing it down. Make a list of ways others can help—whether it’s emotional support, a listening ear, or physical help doing things like chores or errands. Often, those close to us want to help, but might not know how or what things you may find most helpful.
5. If you’re overwhelmed, fearful, or just don’t know where to begin: use "I" statements like "I’ve been diagnosed with PBC, and I wanted to talk to you about it." Starting with "I" statements allows you to share your feelings and needs in a nonjudgmental way.
Conversations build bridges and break down walls
Those close to you may struggle to comprehend the changes you’re experiencing or the challenges you face. However, sharing your PBC journey can lead to stronger relationships. You don’t have to walk alone in your PBC journey. Your loved ones are your allies, waiting to stand by your side through thick and thin. So, take that next step and start the conversation. You can also register for our email newsletter to get more exclusive content like this. Why not encourage your loved ones to sign up too, so they can be informed?
