One of my patients, Emma (not her real name), recently told me that she didn’t seek help for her alcohol problem because she was ashamed. She said that she didn’t want to waste anyone’s time on a self-inflicted problem. She lived with it for years, hiding bottles of alcohol so her partner wouldn’t find out. Only when she turned yellow and vomited blood did she call an ambulance.
What stopped Emma from asking for help? The answer, in large part, is stigma. The word stigma comes from ancient Greek, meaning a mark of shame or disgrace. Originally used to label slaves and criminals, these days, stigma is used to mean a sign of something socially undesirable – in this case, alcoholism.
Alcoholism, or alcohol use disorder, as it is known in medical terms, is the compulsion to drink alcohol even when it can cause physical or mental health problems.
Alcohol use disorder is a medical condition, not a lifestyle choice. This is different from heavy drinking and shouldn’t be used to describe someone who drinks too much by choice.
In people with alcohol use disorder, there may be a physical need to drink alcohol to stop withdrawal symptoms like the sweats or shakes. There may be psychological reasons including uncontrollable craving.
Most of the patients I see in hospital with alcohol-related liver disease have alcohol use disorder. We don’t fully understand why some people develop alcohol use disorder. It is partly genetic but other factors such as social support and mental health conditions play a role.
Why does the stigmatisation of people with alcohol use disorder matter? As Emma’s story shows, the problem is that people don’t come forward to ask for help until it is too late and irreversible damage is already done – the case in around half of all people diagnosed with alcohol-related liver disease.
Worse still, one in six people diagnosed late die on their first admission to hospital and more than a third within a year of their diagnosis.
Stigma is common
Most people with liver disease have experienced stigma first hand.
Several types of stigma are important to understand. First, there is public stigma. This is the most common type of stigma, where people believe in negative stereotypes, develop prejudice, and avoid or look down on people with alcohol use disorder – the drunk on the street might be aggressive so best to avoid him.
Second, there is stigma from healthcare professionals. Some of us do not appreciate that alcohol use disorder is a disease of addiction. We see people with alcohol use disorder time and again coming into hospital in a terrible state and perhaps consider them a hopeless cause, a drain on medical resources or a waste of our valuable time. It is disappointing that this attitude can come from doctors, nurses and other trained healthcare professionals, but it is a sad reality that my patients report.
Third, there is structural stigma. This is the way services are designed that might exclude certain groups of people. For example, same-day appointments with general practitioners may only be available to book early in the morning, and some people may not be able to access them.
All this external stigmatisation of the person with alcohol use disorder drives self-stigma: a feeling of low self-worth and self-esteem.
The more stigma they experience, the more self-stigma they develop and the more they feel that they deserve such treatment. They conceal and deny their alcohol use and are six times more likely to avoid healthcare. They enter a vicious cycle of increasing alcohol use causing more mental and physical harm to themselves.
Things may have turned out differently
Let me come back to Emma. She battled her addiction for several years and with the support of alcohol services and her family, managed several months at a stretch without alcohol. Sadly, she relapsed into heavy drinking and a few months later had a serious bleed from her gullet (a side-effect of severe liver disease), which couldn’t be controlled. Sadly, she died.
I can’t help but think that if Emma hadn’t experienced all that stigma, things may have turned out differently for her. She may have been able to get help to control her addiction and prevent liver disease from taking her life.
What do we learn from Emma’s story? We should remember that alcohol use disorder is not a lifestyle choice. We, the public and healthcare professionals, should reflect on how we treat people with alcohol addiction.
The first step in removing stigma is to recognise the prejudices and stereotypes that we hold and try to overcome these by seeing the person behind the bottle. If we work together, we can eliminate stigma and support people with this terrible medical condition.
Read more: What happens to your liver when you quit alcohol