Being diagnosed with primary biliary cholangitis (PBC) can bring uncertainty and questions. Deciding how much to tell family and friends — and seeing how they respond — can add another layer of emotion.

Loved ones may react in very different ways. Some immediately offer support. Others may have trouble understanding a condition that often has no symptoms in the early stages or causes symptoms that aren’t visible, such as fatigue and itching.

Fear can make conversations difficult, too, and some people with PBC become selective about what they share.

In conversations on myPBCteam, including “How did those closest to you react when you shared your PBC diagnosis?” members have talked about how PBC has affected communication, understanding, and support in their closest relationships. Here are five ways those experiences can play out.

🗳️ Do the people close to you understand what it’s like to live with PBC?

Yes, most are understanding.

No, most don’t seem to understand.

It’s a mix. Some are understanding, but others aren’t.

I’m unsure, or something else applies.

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PBC symptoms and their effects aren’t always obvious to other people. That can lead to frustrating interactions when family and friends assume that looking well means feeling well.

One myPBCteam member described this disconnect: “I don’t think they understand or believe the severity. I have late-stage cirrhosis from PBC, and all they say is ‘You don’t look sick.’ Hmmm, I’m not trying to look sick!!!!”

Another member put the frustration more simply: “They just don’t get it!!! We look fine, but sometimes we don’t feel fine.”

Experiences like these can make people with PBC feel unseen or misunderstood, especially when symptoms aren’t visible. It may take time for loved ones to understand that someone can look well and still have significant symptoms or health concerns.

“I have late-stage cirrhosis from PBC, and all they say is ‘You don’t look sick.’ Hmmm, I’m not trying to look sick!!!!”

— A myPBCteam member

A PBC diagnosis can leave both the person diagnosed and their loved ones with questions. The path to a PBC diagnosis may also be long or confusing for some people, which can make early conversations even harder. Some people may first receive a misdiagnosis or spend a long time looking for answers.

One myPBCteam member described how fear affected communication in their family: “I think they are worried and scared, so with that being said, they are scared to talk with me about it.”

That silence can work both ways. People with PBC may also hold back because they want to protect the people they love. Another member shared, “I’m afraid for my future and how this disease will progress but can’t really talk to my family members, as I don’t want to worry them.”

It may take time for everyone to learn how to have these conversations. You don’t need to have all the answers before talking about what you’re experiencing.

Not every reaction is difficult. Many myPBCteam members described family members, partners, and friends who have supported them.

For some families, support and concern go together. One member said, “My family was very supportive but worried.”

Another member found understanding in their relationship: “She’s a real trooper and has been very supportive and understanding of the symptoms.”

Support can look different from one relationship to another. It might mean listening, learning about PBC, recognizing when someone isn’t feeling well, or simply being there. Having someone acknowledge what you’re experiencing may be especially meaningful when symptoms aren’t obvious to others.

Having supportive people around you doesn’t necessarily make conversations about PBC easy. Some members described worrying about how their health affects the people they love.

One myPBCteam member explained, “My husband has been supportive, but he has his health issues, so I try not to burden him with how I’m feeling.”

Experiences like this show that support isn’t always a simple matter of whether someone cares. People with PBC may find themselves balancing their own need to talk with concern for a partner or family member.

“My husband has been supportive, but he has his health issues, so I try not to burden him with how I’m feeling.”

— A myPBCteam member

At the same time, keeping difficult feelings to yourself can feel isolating. If you’re struggling with how much to share, you might consider talking with someone you trust, finding the right PBC doctor, or asking your healthcare team about support resources.

A PBC diagnosis doesn’t have to be something you discuss with everyone. Some members choose carefully whom they tell, while others limit how much they share with certain people.

One myPBCteam member made a deliberate decision about disclosure: “I have chosen not to tell my sisters because it would not benefit anyone.”

Others described feeling unsupported by people they might otherwise expect to be there for them. One member said, “My kids couldn’t care less.”

“I have chosen not to tell my sisters because it would not benefit anyone.”

— A myPBCteam member

Experiences like these show how personal decisions about disclosure can be. You may want some people to know everything and others to know very little. You can decide what feels comfortable for you and which relationships feel supportive enough for conversations about your health.

How Has PBC Affected Your Relationships?

What did we miss? We’d love to hear how family, friends, or other people close to you reacted when you shared your PBC diagnosis. Share what helped you feel understood, what made conversations difficult, or how you decided what you wanted to tell others.