Standing together: Tackling the stigma of liver disease

Posted on: 5th November 2020

The British Liver Trust is here to support anyone with a liver condition, without judgement. We are proud to stand with a caring community of supporters who help us to do this.

People with liver disease and their loved ones often have to deal with more than just the physical effects of their condition. They also face a unique challenge that can’t be remedied by medication, policy or lifestyle change: stigma.

Non-preventable liver disease

The British Liver Trust is proud to represent a large group of people who are living with liver conditions caused by genetic or autoimmune disorders. These include auto-immune hepatitis, primary sclerosing cholangitis, PBC and Wilson’s disease. These types of liver disease cannot be prevented.

Many people with these conditions feel that they often have to explain the causes of their condition to others, or feel unfairly ‘judged’ because of the link between alcohol and liver disease. These misconceptions are often fuelled by stereotypes in the media and, sometimes, even in the medical profession itself. This needs to stop.

Challenging people’s misconceptions and educating them about the many different causes of liver disease is a vital part of our work. It is really important that everyone with liver disease stands together as this will enable us to better campaign and drive up standards of care for everyone. For example, it would be much more difficult to influence, get traction with government and achieve change if we campaigned for one single liver condition.

Many people in society are overweight or do drink alcohol, so it’s also important that we don’t stigmatise those who have preventable types of liver disease.

Opening up about alcohol

One word that many people associate with liver disease and liver cancer is ‘alcohol’. There’s a reason for this: alcohol is still the leading cause of liver disease mortality in the UK today.

But it’s a myth that you need to be an ‘alcoholic’ to have alcohol-related liver disease. Research clearly shows that many people across the UK are drinking at a level that may cause their liver harm. Alcohol-dependency is a spectrum, and many people with alcohol-related liver disease are able to continue living a normal life for a long time before symptoms of liver damage start to show.

Liver disease can affect anyone

Many people associate liver disease with deprivation. Although the condition does affect the poorest and most vulnerable in society, people with liver disease come from all walks of life and socioeconomic backgrounds. For example, we know that there are many middle class professionals who regularly drink too much alcohol and have sadly developed liver disease but this is often not portrayed.

Only by addressing these complex issues head on, and talking about them openly, honestly and without judgement, will we help prevent alcohol-related liver disease in the future.

 Excess fat and liver disease 

Another preventable form of liver disease with a stigma attached is non-alcohol related fatty liver disease (NAFLD). NAFLD is caused by a build-up of fat in the liver and is predicted to overtake alcohol as the leading cause of liver disease in the UK in the future. There are often no symptoms in the early stages, and with two thirds of the UK adult population overweight or obese, this is a condition that many of us don’t even realise we have.

People are often unfairly judged for being overweight. But, as with alcohol, the issues around why we eat too much or don’t get enough exercise are complex.

Vanessa Hebditch, Director of Policy and Communications at the British Liver Trust, says: “Obesity is more a problem of our environment than individual willpower. We need the Government to implement policy changes that make it much easier for the public to make healthier lifestyle choices. Only then will we see a reduction in cases of NAFLD in the future.”

Viral hepatitis

Liver disease can also be caused by contracting a virus and there are many preconceptions about how this happens.

Some types of viral hepatitis are more common in certain ethnic communities. Some are linked to deprivation and are contracted through contaminated water.  Others are contracted by drug use – for example sharing needles or a rolled-up note or straw for taking drugs. There are also many other ways people can contract viral hepatitis, for example at work through needle-stick injuries, by having unprotected sex with an infected person, or at birth.

No matter what the cause, the British Liver Trust is here to provide support and advice for anyone affected.

How the British Liver Trust tackles the stigma

We work hard to strike a balance between taking action on preventable liver damage and improving understanding of the wide range of different liver conditions that affect so many people.

  • Our Sound the Alarm campaign calls for ten key changes that will significantly improve diagnosis, access to treatment and specialist care for all liver patients.
  • We work with many other organisations to campaign for policy change on a national scale. Using our collective voice, we can influence the Government, and other key decisionmakers, to drive up standards of care for everyone – no matter the cause.
  • To improve awareness of liver disease among the general public, we publish stories online and in the press about people with all kinds of liver condition. It’s thanks to our supporters’ openness, honestly and bravery in sharing their personal experiences that we can do this.

Vanessa continues: “No matter what the cause of your liver condition, you should never feel you need to hide it or be ashamed. We encourage people to talk as openly and honestly about liver disease as possible – you never know who you might help by doing so.

“It’s not always easy, but by standing together unconditionally for people with all types of liver disease, together we can achieve real change.

“People with liver disease have to deal with a myriad of physical and emotional challenges, at the same time as challenging people’s preconceptions of the disease. Because of this, liver patients are actually some of the strongest and most inspirational people I know.”