1 Talk to people who understand
It can help to talk to people who are going through the same things as you.
The British liver trust has support groups for different kinds of liver disease that meet online.
2 Know your rights
People with liver disease told our survey that some of the worst stigma happened in healthcare settings and at work.
In both these places you have a right to be treated fairly, legally and without discrimination. Knowing your rights can help you to get the help you need.
There is more information about what your rights are further down this page.
3 Look after your wellbeing
On a plane we are told to put on our own oxygen mask before helping others. The same can apply to dealing with stigma.
It’s great that some people feel able to challenge harmful and outdated beliefs but it can also be very hard and upsetting.
If you have suffered stigma, make your own wellbeing the first priority.
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.
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:
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.
People with liver disease, whatever the cause, should be supported not judged. Let’s end the stigma.
Sign up to our campaign, and stand with us today to Stamp out Stigma.Add your name