Just diagnosed
with primary biliary cholangitis
The information on this page is for:
- Adults with primary biliary cholangitis or suspected primary biliary cholangitis.
- Family, friends, carers, and healthcare professionals.
Find out about autoimmune liver disease in children
Being diagnosed with primary biliary cholangitis (PBC) can be a big shock. PBC is a rare condition – most people have never heard of it and know nothing about it. So you are likely to have lots of questions and may feel overwhelmed. There is no right or wrong way to react.
Because your family and friends are unlikely to have come across PBC, you will probably find that you have to keep explaining it. This can add to the stress of being diagnosed. Keep a note of the web address of this information in your phone – you can text or email it to anyone who asks. Then they can read about it in their own time (instead of taking up yours!).
Sometimes people assume that liver disease must be related to alcohol. This is absolutely not the case with PBC. It is not caused by drinking alcohol, or by anything else you have or haven’t done. For advice on dealing with any hurtful comments or reactions, read our advice on coping with stigma.
On this page:
Understanding PBC
It’s important for you and your loved ones to understand that although PBC is a life-long condition, it’s generally very slow to develop and there are effective treatments available. Although PBC does damage the liver over time, treatment and the slow nature of the disease mean that many people never develop advanced liver disease.
Family and friends can help by learning about PBC and how it’s likely to affect you. The commonest symptoms of PBC are fatigue and itching. Not everyone suffers from itching, but if you do, there are treatments your doctor can give that will help to control it.
Fatigue is more difficult to manage with medication. Fatigue related to this type of illness isn’t just a case of ‘feeling a bit tired’. If you are feeling very fatigued, you need to rest. You may have to learn to manage this with changes to your lifestyle – there is more about that in our sections on treating PBC and living with PBC.
Telling people
It’s up to you who you tell about your condition. You don’t have to tell anyone if you don’t want to. But it can be a relief to tell someone else. Having someone to talk to can stop you feeling alone. They can also help to support you with emotional and practical things. Think about who you trust and who has been there for you in the past.
Liver UK’s Support Groups are a chance to meet other people living with a liver condition, including a group for people with genetic and autoimmune liver conditions. It can be a real help to talk to other people in the same situation. They understand what you’re going through without you needing to explain. Visit our Support Groups page to find out more.
At work
You don’t have to tell your employer about your diagnosis if you don’t want to. But it may be helpful if they know. As PBC is a long term condition, you are covered by the Equality Act 2010. This means your employer has to make reasonable adjustments to make sure you are able to do your job, for example flexible working hours and time off for tests and check ups. Speak to a social worker or get advice from the Citizen’s Advice Bureau.
Keeping as well as possible
Having a long term liver condition will affect your day to day life to some extent. How much varies from person to person. There are things you can do to keep yourself as well as possible.
- Try to eat a healthy, well balanced diet. There isn’t a specific diet for PBC, but cutting down on fats may help to avoid digestive upsets
- Regular exercise will help to keep you fit and at a healthy weight. It also helps to reduce fatigue and lifts your mood, so it’s good for your mental health.
- Getting enough sleep will also help with fatigue. Speak to your doctor if your sleep is being disturbed by itching.
- You can drink alcohol, but don’t have too much. It’s not good for your liver and can disturb your sleep. Check with your doctor, but the general advice is to have no more than 14 units a week and at least 3 days without alcohol in a row every week.
- If you smoke, stop. Smoking is linked to PBC but is also a factor in many other diseases.
- Look after your social life! Seeing family and friends is very important for your mental health, particularly when you are coping with a chronic health condition.
Getting the support you need
If you are having treatment at a specialist liver centre, there is likely to be a clinical nurse specialist you can ask for advice. You should have a phone number and email address you can use between appointments if you need to.
Liver UK is here for you too. We have information, a nurse helpline, support groups and an online community. We’ll help you connect with other people who have PBC and understand what you’re dealing with.
PBC is a long-term condition, so how you feel and what you need to know will probably change over time. Our information is designed so that you can read as much as you need to. We check it regularly to keep it up to date. Be careful of information you find on the internet, check it is from a reliable source like the NHS or a well-known charity.
Support
How Liver UK can help
A diagnosis of liver disease can be worrying, and you may have a lot of questions.
We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.
Your feedback
This content was last reviewed: October 2024
Our expert reviewers:
We would like to thank everyone who helped with creating and reviewing this page. Including Dr Neil Halliday, Royal Free Hospital, London and Janeane Hails, Addenbrooke’s Hospital, Cambridge. And all our patient reviewers.
Find out how we make our patient information.
Everyone’s experience of liver disease will be different. Always talk to your specialist medical team for personal advice.
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