Telling people about your liver condition

Telling friends and family

Many people find it helps to tell those closest to them about their condition. Friends and family can provide practical support and help you to stick to changes to your diet or everyday life. Or they might just be someone to talk to when you need it.

But sadly not everyone is supportive. So it can be scary telling the people you care about that you have a liver condition.

If you have viral hepatitis, think carefully about who might need to know. For example people you live with or have sex with. You can help protect people and stop the virus getting passed on. You can find out more about viral hepatitis here.

Apart from my husband and best friend, no one knows … not because of shame, but because my health is no one’s business.

Who to tell?

There is no right or wrong way to decide who to tell.

You might not want to tell everyone about your condition. It is fine to just choose one or two trusted people. Maybe someone who has been a good listener in the past. And who you can trust not to make assumptions or share private information with others.

Some people prefer to have it all out in the open and tell everyone. Liver disease affects many thousands of people, but lots of people do not talk about it. So you may well find there are other people you know with experience of living with a liver condition. If you are able to be open, it can start that conversation.

 We wanted our community to pray for him, so we broadcasted it and it gave us much comfort and support.

Telling children

It is normal to want to protect children from worrying news. But talking helps them to know that they can still come to you with their worries. You can find more advice about talking to children here.

How much information should I give?

Again, this is personal choice, and it might be different for each person you tell. It is a good idea to think about how much you want to share with someone before you have the conversation.

If you need to let people know that you are unwell, but don’t want to be specific about your condition you could just say that you have a problem with your digestive system. Your liver is part of your digestive system so you are telling the truth. If someone presses you for more information, it is ok to just say you don’t want to talk about it.

If you want to give people detailed information, it can help to share reliable sources of information so that they can take time to learn about your condition. You can find out more about sharing our information further down this page.

I am an alcoholic and my liver condition is down to some very bad decisions when I was younger, although when my liver gave up I had nothing but good will from everyone that was told. You will be surprised at people.

 

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Telling healthcare professionals

All medical professionals must keep your information confidential.

If you need medical tests or treatment

You should always tell your doctor, nurse, or other medical professional if you have a liver condition.  Even if you are seeing them about something that has nothing to do with your liver. This is to make sure that any treatment they give you is safe.

Some medicines can work differently if you have a liver condition. Others can interact with your liver medicine. So it is important that your doctor knows about your condition, and any treatment you are having, before they give you any other medicines.

If you need medicines or an anaesthetic from a dentist

You should tell them about your liver condition. This is to make sure that they choose the right treatment for you.

You will face a lack of knowledge from friends, relatives and most surprisingly the medical world. AIH (autoimmune hepatitis) is a rare condition, it’s about putting yourself in the position of others who very likely haven’t heard of it. Printing off some leaflets or directing them to the British Liver Trust is a good idea.

If you currently have viral hepatitis

If you have viral hepatitis B or C that is at a stage where it can be passed on to others you should tell anyone giving you medical treatment. This also includes dentists and complementary therapists you have close contact with, for example acupuncturists.

If you have had viral hepatitis in the past

If you have been successfully treated for hepatitis C there will be no virus in your body. So it cannot be passed on. There is no need to tell healthcare professionals about the virus. But you should tell them about any liver problems that you still have.

If you have ever had hepatitis B, even a short infection, a form of the virus can stay in your liver and be reactivated by certain medicines eg some cancer drugs. Tell all health professionals you have tested positive for hepatitis B so they can check medicines will be safe for you to take.

What other people think about my condition is none of my business!

 

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Do I need to tell my employer?

You do not have to tell your employer that you have a liver condition unless it will have an impact on safety at work. But there can be advantages to telling them.

If you tell them then they will be required by law to make “reasonable adjustments”. For example, making it possible for you to take extra time off work for medical appointments.

They must also keep your diagnosis confidential.

Liver disease should be treated like any other medical condition at work

You can find out more about working when you have a liver condition, including information on reasonable adjustments and other legal rights here.

My friends and close co-workers are aware of my medical situation, particularly because there are times during the year when I need to be absent for various diagnostic tests. For me, this illness is just another part of my life.

Who should tell their employer for safety reasons?

You are only legally required to tell you employer if your medical condition can have an impact on safety at work. For example, if you work in health care and you have viral hepatitis B or C at a stage where it could be passed on to others.

If you do tell your employer, they must keep your information confidential.

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Insurance

Many types of insurance will ask for information on your health. It is very important that you tell them about all your health conditions. If you do not, they can refuse to pay out on the insurance. Even if the reason for the payout is nothing to do with your liver condition and you have been paying in for years.

If you have existing insurance policies, including travel insurance, you must always tell them about any new diagnosis.

You can find out more about insurance for people with a liver condition in our Money section.

 My family and close friends obviously know as they supported me when I was originally diagnosed and very unwell. Beyond them, given I’m very well now and no one would guess – it’s very much on a needs to know basis because of the misconceptions and stigma.

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Sexual partners

Most liver conditions cannot be passed on through sex. It is possible, but very rare for some types of viral hepatitis. You cannot pass on any type of liver disease by hugging or kissing someone.

Viral hepatitis B and C can sometimes be passed on through sex. This is rare. Men who have sex with men are at more risk. Especially if they also live with HIV.

If you have been successfully treated for hepatitis C there will be no virus in your body. So there is no risk of passing it on.

If you have hepatitis B or C it is best to talk to your partner about your condition and decide together the best way to protect them.

If you have hepatitis B, your partner can get a vaccine. Find out more about the hepatitis B vaccine here.

You should also let past sexual partners know if they could have picked up hepatitis B or C. They will then be able to get a test. If you are finding this difficult, a healthcare professional at your local sexual health or blood borne virus clinic can help contact them. They will not give out any of your information.

You can find out more about viral hepatitis here.

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Information for you to share

Telling people about your condition can open the door to support. But it can be difficult trying to explain what is going on. Especially if you find yourself having to go over it all many times.

A good way to deal with this is to send or give people reliable information that they can read in their own time. And that they can go back to if your condition changes.

We printed off your information/ fact sheet … read it and talked about the condition and treatment and possible side effects…I told families and friends and asked them to do the same.

Online information

Our website has detailed information about the different types of liver conditions. And all the ways that having a liver condition can affect your life. All our information is written alongside patients and medical experts.

You can find links to all our condition pages here

You can find more information about living with a liver condition here

We also have information for carers here

Printed information

For lots of conditions we also have booklets. These are available as PDFs on our website. For some conditions we also have short PDF factsheets. These are especially useful if you just want to share the key facts about your condition.

You can find links to all the PDFs on the condition pages. You can also get them on our download publications page here.

If you need a paper copy of any of our publications, or of a condition page that does not have a printed publication, you can get in touch with us by email: info@britishlivertrust.org.uk or by calling: 01425 481 320

Challenging stigma and myths about liver disease

Sadly a lot of people still make assumptions about liver disease. Or even blame people for their condition. If this happens it is fine to just walk away.

If you feel strong enough to tackle it, we have information you can share. This includes real life stories, the results of our stigma survey and our page on liver disease myths.

I have PBC (primary biliary cholangitis), I’d never heard of it until I was diagnosed with it…If I sum up the courage to tell people they say ‘oh have you been drinking?’ I say ‘not all liver conditions are the result of alcohol’.

 

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Support for you and your loved ones

Talking about your condition can be tough. Especially if people react badly. If you feel like it is having an impact on your mental health, then whatever you are going through, you can call the Samaritans on 116 123. You can find more information about looking after your mental health here.

The British Liver Trust is here to support everyone who is living with a liver condition. We can also support friends, family and loved ones.

Special thanks

We would like to thank all of the members of our support groups and online forum who shared their experiences of telling others about their condition. The quotes on this page are just some of the comments that were kindly shared with us.

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Publication date: January 2024