Having recently completed the creation of our latest A Life in a Day experience, I’ve come to realise that the most unexpected insight arising from talking to patients is the cynical everyday stigma faced by people living with Hepatitis B.
Hepatitis B is an HBV viral infection that primarily targets the liver. Some strains of Hepatitis – such as Hep A or Hep C – are curable, but unfortunately modern medicine has not yet developed a cure for Hepatitis B. If left untreated, it can lead to serious health complications such as jaundice, liver fibrosis, liver cirrhosis, and puts patients at a much higher risk of developing liver cancer.
Thankfully, medical advancements have improved the management and prognosis of the disease, but my time with patients revealed that a very significant challenge remains: the social stigma faced by those living with Hepatitis B.
When I first began speaking to patients, I thought that assumptions about a less than safe sexual history or intravenous drug use would be the main source of stigma. But I was in for a shock.
The main source of stigma turned out to be alcohol. Or more specifically alcohol abuse. Some patients reported that people can hear the phrase “liver problems” and immediately assume the illness must be self-inflicted.
This stigma is rooted in misconceptions, stereotypes, and a misunderstanding of Hepatitis B. Whilst alcohol is known to be a cause of liver related issues, it does not cause Hepatitis. And yet, several patients I spoke with had experienced assumptions that the liver problems they were experiencing were because they had drunk themselves ill.
This stigmatisation can lead to discrimination, social isolation, and emotional distress for those living with Hepatitis B. Feeling judged or blamed for their condition is a compounding factor of stress that patients must contend with. In addition to managing the condition itself.
I never disclosed my status to anyone other than my own family members for years. Even though I am a nurse, I feel shame. I feel like I will be discriminated against and become isolated from people."
The level of stigma surrounding Hepatitis B proved particularly challenging in the creation of our programme. As a part of our research process, we always speak with several patients living with the condition. However, when trying to find patients to speak to about their experience of Hep B, patients were often very reluctant to speak about the impacts it has on their lives. Let alone be open enough to identify themselves as infected with Hepatitis B in the first place. We worked very closely with the patient to build the trust that meant they shared their stories. without their valuable contribution, we would not have been able to produce the programme.
Understanding stigma and the emotional impact it can have on people is vital for anyone seeking to improve the patient experience across the healthcare landscape.
A Life in a Day of living with Hepatitis B, by exploring those emotional as well as physical impacts, will – I hope – help healthcare professionals better empathise with the patients they ultimately serve.
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