Skip to 0 minutes and 13 seconds REGINA BASH-TAQI: People are genuinely worried about the stigma and what it would mean practically. So for example, let’s say, OK, I feel a fever coming on. What do I do? I know that my main hospital is not working very well, so what do I do? I either present myself to an Ebola isolation unit where I think, OK, here I might have a chance to be infected, but also I may be stigmatised. If I come back home, and my landlord hears that I’ve been to an Ebola centre, he then gives me notice. And I don’t blame the landlord either, and I don’t blame the person, but the landlord also is looking after other tenants. He’s looking after his livelihood as well.
Skip to 0 minutes and 51 seconds What does he do? Your boss hears that you possibly could be infected with Ebola. If you’re lucky, he stops you from coming to work for 21 days, but sooner or later, probably if, let’s say, you’re a house boy or you’re a porter or cleaner, what are the chances that people are going to keep paying you for a long time, the chances that you lose your job? So people have all of these things to keep thinking about.
Skip to 1 minute and 15 seconds YASMIN JUSU-SHERIFF: I understood through the women lawyers group that provides legal services that they had a lot of initial inquiries and complaints from health workers and from nurses about stigma and discrimination in the communities, that we heard stories about families of deceased nurses being given notice to quit and being asked to leave. The landlord suddenly wanted the property.
Skip to 1 minute and 52 seconds REGINA BASH-TAQI: There is a lot of stigma. And I’m not blaming the people who are stigmatising either because what it is that everybody’s fearing. Stigma is coming out of fear. So this person has Ebola, what does that mean for you? It means that you associate with them, you most likely catch something that will also be devastating for you. So people are really just trying to protect themselves. So the health workers, for instance, it’s devastating, but health workers, people who work in the burial teams, a lot of them have been made kind of homeless. So they have to find somewhere else. Their landlord’s kicking them out, but family members also.
Skip to 2 minutes and 32 seconds In Sierra Leone, there’s a lot of extended family and people living together, and if you then choose to sign up to work as a burial team member, for instance, it’s not unlikely that members of your household would say, well, find somewhere else to live, because we think that you might be infected, and you’ll infect all of us. That’s really hard, also, in terms of trying to recruit people for the intervention that’s needed, and a lot needs to be done. Somebody needs to, whether it’s a whole kind of accommodation, a lot– a lot– needs to be done for actual health workers. We really have not looked after them as they need to be looked after in this crisis.
Skip to 3 minutes and 16 seconds Survivors are finding it really hard just to make a livelihood. I would say families, for instance– I know that a lot of families– I’ll give you an example of a mother, for instance, who was lucky not to get infected but her two children did and survived, who had to move. So she literally moved town and went somewhere totally different where people didn’t know her, where she could just start up. And that’s unusual in the sense that maybe that person had the resource to be able to do that. A lot of other people will just be kind of living on the fringes.
Skip to 3 minutes and 53 seconds There will be a lot of work to pick up in Sierra Leone once the main crisis is over because there will be a lot of homelessness, a lot of serious destitution at a level that we have not known it before.
Skip to 4 minutes and 6 seconds PEARLYN MAMULU: People who are associated with Ebola, it’s more so like a fear thing. So whether you’re a health worker or you’re a survivor, nobody’s going to want to come close to you because they’re going to automatically assume you have a trace of the virus. And at any minute, at any given time, you could manifest symptoms, and then you can affect the next person. So it’s usually not a positive thing. Like if you get healed, they’ll say, oh, well, congratulations, but I feel like you still have a bit of trace in your blood of the virus. So I’m still going to stay clear of you, just so that I don’t take any chances or any risks.
Skip to 4 minutes and 48 seconds That’s usually how it is.
Stigma around 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.
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.
© London School of Hygiene & Tropical Medicine