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Ebola Stigma: Treatment and Survival

This article discusses the stigma surrounding the Ebola virus, including what happens after treatment and survival.
Understandably Ebola causes fear, and out of fear comes stigmatisation of all those involved, not just the sick patients but survivors, healthcare and other Ebola response workers and their families. Families are ostracised, landlords terminate contracts, and people find themselves homeless and rejected by their communities.

Survivors

Surviving the Ebola virus is often just the first step in a journey that for many people may continue long into the future. The ravages of the disease are now felt in psychological distress, rather than in bodily pain. Being socially stigmatised by former friends and neighbours due to their overwhelming fear of contracting a deadly disease can make things very difficult for people when they try to return to their old lives, after having been treated for the disease. Bintu tells her story:
’When my auntie was told she would survive Ebola we felt blessed. That was seven weeks ago. But back in the community the fact that she was ever touched by the disease became a curse. The community was fearful of us. People had been calling us “Ebola Family” and I was thought of as the “Ebola Girl”. I felt ashamed. It’s hard to live in a place where you feel that everyone is talking about you. They would drive us away if we came near, shouting at us to stay away because we had Ebola. All because my aunt is one of a few people to survive the disease.’1
Similarly, Fanta, a 24-year-old teacher in Guinea, survived Ebola and shocked her community when she returned alive. She says,2 ’Many people were shocked to see me alive and looked at me as if they were seeing a ghost […]. My family supported me, but I closed myself up in my room and cried for two hours.’
In some cases, survivors have lost their jobs due to stigma. Zena, a 24-year-old woman in Guinea, lost her teaching job due to fear of Ebola among parents and students. Zena’s cousin, a 34-year old named Mohamed, also lost his job as a civil servant.3
Child survivors who have been orphaned due to Ebola may be rejected by extended family due to fear of the virus, as was the case with eight-year-old Samuel.4 He was then matched with an adult who had survived Ebola, however the pair were forced to relocate from the community in which they were originally placed due to stigma.

Healthcare and other Ebola response workers

Healthcare workers, both local and those returning home abroad, have spoken of discrimination they have experienced as a result of working in treatment centres caring for the sick. Robert, a member of a burial team in Liberia tasked with collecting and transporting bodies of Ebola victims to a crematorium, explains how his (volunteer) position caused others to stay away from him5: ‘I eat alone at my house. My girlfriend don’t want to visit me, friends don’t want to visit me.’
A doctor from the UK working with Médecins Sans Frontières (MSF) described a shift in public opinion in the UK between his first mission a few months before, and when he returned to Sierra Leone in November 20146:
‘As I was preparing to leave I became aware of an uncomfortable shift in public opinion. Western introspective paranoia about Ebola suddenly reaching our shores was competing with sympathy for the plight of the actual people suffering. And me? I am no longer the selfless hero, but the selfish vector. “Don’t you think it’s a bit selfish to go over there? You could end up spreading it back here.” I’d initially put the comment down to one misinformed individual. However, it has become clear that this is not an isolated opinion, but a growing consensus.’

Survivors in the fight against Ebola

There are also many examples of survivors helping the fight against Ebola after recovery. Salome, a former patient at a treatment centre in Monrovia, Liberia, has capitalised on her likely immunity to Ebola by working as a mental health counsellor at the treatment centre where she nearly died. She shares7, ‘[God] kept us alive for a purpose, […] Even though our parents didn’t survive the virus, we can help other people to recover.’ In Guinea, Zena and Mohamed, found work for MSF as Ebola Ambassadors, working in communities to teach others what Ebola is, how to prevent it, and what to do if someone becomes infected. They also act as powerful symbols that people can and do survive Ebola3.
Dr Colin Brown, working in Sierra Leone, describes how likely immunity of survivors to Ebola can be used to help in the fight against Ebola, and how this may help reduce stigmatisation8:
‘We have got several nurses who have been survivors. […] [T]hey’re wonderful because they can help people through the […] disease process. They’ve been there, they know the score and they can help people with some of the symptoms and what they’re likely to feel in the future. There is a move to help survivors take on a much more strategic role. There are survivors looking after orphans […] We’re seeing a lot of survivors staying on after they’ve been cleared […] to look after the children and there are ways that are being looked at now by the government to make that a much more formalised process whereby survivors will go back and help […][the potential use of convalescent plasma in treatment] is another way that survivors can contribute. There is still lots of stigma [towards survivors], there’s lots of fear attached to people even once they’ve survived. […] I think there is a real benefit in using those people as a workforce and showing the good work that they can do in trying to dispel some of that stigma.’
Efforts are being made to destigmatise Ebola in the affected communities. Some treatment units send staff members to survivors’ homes to discuss their return with relevant parties, such as landlords, family, community members, to try and prevent rejection. Community education programmes have begun, which aim to reduce stigma through education about the virus and its transmission. Social media campaigns have also attempted to raise awareness and dispel myths, such as the ‘I am Liberian, not a virus’ campaign.9
Social stigma surrounding an infectious disease such as Ebola can have far-reaching consequences and present major barriers to health care access. If those who are ill try to hide their condition, they will then be more likely to infect others. In terms of wider political impact, a stigmatised population may distrust health authorities and resist cooperation during a public health emergency. Stigma may distort public perceptions of risk, resulting in mass panic among citizens and the disproportionate allocation of health care resources by politicians and health professionals.10-11 Stigmatisation of those surviving and fighting against Ebola is an unfortunate legacy that may exist for many years to come, and action to reduce stigma is needed.
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Ebola in Context: Understanding Transmission, Response and Control

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