Things that used to be hidden away can now be talked about openly. Instead of hiding medical problems, more and more people are able to speak up, ask for help and be treated fairly.
We are beginning to understand the complicated causes of diseases. The society we live in, the genes we are born with, and the things we do in our daily lives all play a part in who will develop a medical problem.
But for people with a liver condition stigma is still here and the impact is serious.
No one should feel blamed, judged or treated differently because they have liver disease. Yet for many people, stigma remains a daily reality. It can affect confidence, relationships, mental wellbeing and even whether someone feels able to seek help or access the care they need.
What is stigma?
Stigma is unfair comments and treatment. It is based on stereotypes, and the assumption that a person is somehow different to everyone else, and less deserving of help or kindness.
One of these false assumptions is that liver disease is only caused by alcohol. Because of this, people with all kinds of liver conditions have to answer the same questions about how much they drink over and over again. Often, even healthcare professionals do not believe them if they say they don’t drink.
“It made me very defensive when explaining my condition, I always quickly told them it was nothing to do with alcohol.”
In the UK many of us do drink alcohol and eat a less than perfect diet. But there is deep-rooted stigma against people who are seen to eat or drink “too much”. This stigma is usually not deliberate, people often don’t realise they are being hurtful. Stigma exists because of the messages that surround us all. But it means people are ashamed to ask for help or even admit to themselves that they might need it. It’s time to stamp out stigma
What is the impact of stigma?
It's time to stamp out stigma
What you told us in our stigma survey
We want our work to tackle stigma to be led by the people most affected. That’s why we asked people living with a liver condition, along with their friends and families, to share their experiences via a survey in 2022.
More than 1,400 people responded, including 1,134 people living with liver disease. Together, their stories paint a clear picture: stigma is still a daily reality for many people. It affects mental health, relationships and work, creates barriers to seeking healthcare, and can even influence the care people receive.
The findings below show just how widespread the problem is. Behind every statistic is a personal story of someone who has faced judgement instead of understanding. These experiences strengthen our determination to challenge misconceptions, improve support and Stamp Out Stigma.
%
people we surveyed said stigma has impacted their mental health.
Stigma reaches far beyond healthcare. People told us it affects their confidence, relationships, work and everyday wellbeing.
Nearly 1 in 3 said living with stigma alongside a serious medical condition had led them to consider suicide or self-harm.
people with a liver condition find it hard to even talk about their diagnosis.
Many people feel they must keep it hidden.
“I have told none of my friends, colleagues or family just my immediate household” – survey respondant
%
of people with a liver condition said stigma had prevented them from seeking or receiving the help they needed.
The reasons are complex. Some people fear being judged by healthcare professionals, while others have internalised the stigma surrounding liver disease and feel they do not deserve support.
.
with liver disease have experienced stigma from a healthcare professional.
Almost half (48%) also felt that unfair assumptions or stereotypes affected the care they received.
Everyone deserves compassionate, non-judgemental care, whatever the cause of their liver disease.
.
Help and advice for dealing with stigma
There are many kinds of liver disease. No one chooses to get any of them. But people still face stigma, assumptions, and thoughtless comments about their condition.
Our survey of people living with liver conditions found that stigma has an impact on healthcare, work, social lives, relationships and mental health.
Here is some advice on how to cope with stigma in some common situations.
Three ways to cope when faced with stigma
Talk to people who understand
Know your rights
Look after your wellbeing
Stigma in healthcare
Many people tell us how great the doctors and nurses treating them are. But sadly our survey found that half of people with a liver condition felt they had experienced stigma from a healthcare professional.
“the nurse told me I’m overweight and they would no longer be treating me because they don’t help people who don’t help themselves”
This should not happen. Whatever type of liver condition you have and however it was caused, the NHS states that:
“You have the right to be treated with dignity and respect, in accordance with your human rights.”
Although doctors and nurses may need to ask you about what you eat and drink or about other risk factors, they should never blame you for your condition and should offer help if there are changes you can make to improve it.
Healthcare professionals must keep your medical information and anything you tell them confidential.
What to do if you experience stigma from a healthcare professional
- If you feel able, you can explain to the person why what they have said is hurtful.
Many people do not understand what stigma is, or the impact of their words. Talking to someone who has been harmed by stigma can change attitudes.
- Write down what happened as soon as you can afterwards.
In can be difficult to remember exactly what happened in an upsetting situation. So it can help to write some notes. You can then give yourself some time before going back to the notes and deciding if you want to do anything more.
- Ask to see a different doctor or nurse for future appointments.
- Give feedback or make a complaint so services can improve.
There are a number of ways you can make services aware of the issue of stigma. Some services will ask for feedback. Many hospitals have a patient service such as PALS in England or PASS in Scotland. If you decide you need to make a formal complaint you should be able to find your service’s complaints procedure in leaflets, on their website or by asking a member of staff.
Stigma in the workplace
Almost 6 in 10 people with liver disease told us that stigma affected their work or career. This is on top of the difficulty of juggling work and a serious medical condition.
“I have become very quiet and remote at work and just keep my head down”
The people you work with should treat liver disease just like any other medical problem but stigma means that this doesn’t always happen. If you are concerned about how your employer will react to your liver condition there are some steps you can take before telling them:
- Check your company’s sickness and disability policies.
These should set out the rules for taking time off because you are unwell or have medical appointments.
- Think how your condition will affect your work.
Open conversations about liver disease help to tackle stigma. But you do not have to tell your employer that you have a liver condition unless it will have an impact on safety at work.
Your employer is not allowed to sack you just because you have a medical condition. Companies have to make ‘reasonable adjustments’ to allow people with a long term condition to do their job. But they can take action if your attendance or performance are affected. If you think this might happen, it could help to speak to someone at work and find out if any changes can be made before there is a problem.
- Decide who to tell.
Ideally, you should be able to talk to your manager about your condition. If your organisation has a human resources (HR) department it can help to talk to them about your concerns and ask them to explain company policies. Anyone you tell about your liver condition should keep the information confidential.
What to do if you experience stigma at work
- If a colleague is making thoughtless comments, explain the impact.
Many people won’t realised that stigmatising attitudes are harmful and based on false assumptions. Sharing the impact of stigma can make people think about what they say and even change attitudes.
- Keep notes
It is a good idea to keep notes of what happens, especially if you think there could be a long term problem with stigma in your workplace. Being able to refer back to specific event or comments can help if you ever need to make a complaint or challenge a decision.
“I have been sidelined for work opportunities … This is in their view to protect me but I am capable of making those decisions about myself”
- Speak to someone who can help.
If speaking to an individual isn’t enough you can raise the problem with your manager or HR team.
Other sources of advice on workplace rights:
Stigma and your social life
In the UK, a lot of our social activities are based around food and alcohol. This can be very difficult if you have a liver condition and need to be careful about what you eat and drink. It is often assumed that everyone will drink alcohol at work or social events. Even greetings cards and gifts carry pictures and slogans about alcoholic drinks.
Yet the stigma against alcohol and obesity means it can be difficult to explain why you are cutting out alcohol or unhealthy foods. Around 7 in 10 people with a liver condition told us that stigma has a negative impact on their social life. 3 in 10 said that that had lost friends because of stigma.
“Friends think you can’t have fun without alcohol on social events”
Ways to deal with stigma in your social life
- Give a simple explanation
Some people think it is ok to pressure others into drinking. They are wrong. You do not owe anyone an explanation if you are changing what you eat or stopping drinking. You have every right to simply say “no”. You could also say that you are cutting down to be healthier or that you can’t have alcohol because of medicine you are taking.
- Find supporters
If you are able to be open with someone about what you are experiencing, ask for help. They could try a healthier diet with you or help change the subject if someone else is demanding you drink.
“I am lucky that my friends care very much and try to help me when they can”
- Try something new
Try out activities that aren’t based around food or alcohol. This could be a sport or a craft. Anything where you can have fun with others but there isn’t an expectation that you will all be drinking.
- Be open, if you can
Stigma makes it much harder to be open about having a liver condition. But being open is also a way to stand up to that stigma. Showing others that liver disease is caused by many things, or that it can happen to someone just like them, breaks down false beliefs and stereotypes. It also makes it easier for others to consider if they may have a problem and need help.
More than 1 in 5 people in the UK are at risk of developing liver disease so you are not alone.
Getting help
It can be hard to stand up to the stigma about liver disease. If you need some help, Liver UK is here for you.
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