If Florida Kayindo hadn’t contracted Ebola herself, she wouldn’t believe that it existed. The 36-year-old grins with bemusement thinking about all the rumors she’s heard. “In the beginning people thought Ebola wasn’t a real illness, it was brought in by white people,” she explains.
“White people are evil, that’s what people in the community believe,” Kayindo tells TIME. “Before Ebola white people were around, but now they’re thinking white people came with Ebola.”
Kayindo was declared Ebola free in November 2018 and since then she has been working in a childcare center on the grounds of Beni General Hospital, in eastern Democratic Republic of the Congo, North Kivu province, close to where the Ebola outbreak began last August. Like other survivors, she has antibodies that mean she can’t get sick from the virus again, and is now being paid to care for the children of others who are undergoing treatment.
Despite her experience with the virus, Kayindo occasionally appears to question whether her understanding of Ebola and how it is contracted is correct. She finds herself asking could it have been spread through food or water, similar to a scene she once saw in an old sci-fi movie.
Kayindo is not alone in her skepticism. Misinformation has contributed to the difficulties containing the virus in DRC, where more than 1,300 people have now died in the second largest Ebola outbreak in recorded history. Rumors have led local Congolese to distrust both medical workers and the authorities’ response.
Souleymane Diallo, UNICEF’s Senior Ebola Coordinator, said residents in affected areas have limited understanding about the management and treatment of Ebola or how vaccinations and interventions work. “The lack of information leads the community to ask a lot of questions about the Ebola virus,” Diallo tells TIME. “It’s become a source of the community’s lack of confidence in the response.
Given political tension in the country, there is speculation among communities that the central government – roughly one thousand miles away in Kinshasa – is spreading the virus on purpose to gather support or using it to quell opposition. This was exacerbated when residents of Beni and Butembo were barred from voting in the recent presidential election, ostensibly because of health risks.
Others believe that international aid organizations are behind the outbreak. This belief has been compounded by the amount of money that suddenly seems to be flowing into DRC’s east to help assist efforts to contain Ebola. They argue they got little relief from conflict and other health issues before this, and ask why Ebola would be any different.
With an internet penetration of less than 7%, word of mouth remains the most common way for rumors to spread in DRC. These have included speculation that people who died from Ebola are deliberately being killed in treatment centers.
Ebola’s viral load spikes when someone dies, meaning burials need to be carefully conducted. Since the outbreak began, dozens of volunteer teams who are associated with the Red Cross or the Congolese government have been involved with more than 5,600 burials.
Kate Learmonth, a health coordinator for the International Federation of Red Cross and Red Crescent Societies, said the humanitarian organization is sensitive to what’s being said among Congolese communities in relation to concerns about Ebola burials. In an attempt to combat the spread of false information, burial and community outreach teams are logging what they hear in communities. Since last August, they’ve gathered more than 85,000 messages of complaint, feedback and rumors from 1,300 volunteers working on the Ebola response.
This has influenced changes in how those who have died from the virus are buried, including a switch to using clear body bags to secure victims in. These allow mourners to say goodbye, and also helps to combat mistruths about what happens to an Ebola patient after they die, including pervasive rumors that their organs are harvested.
In recent months, Red Cross burial teams have also started allowing relatives of the dead to don protective clothing and accompany their body through the whole process.
“We really feel there needs to be a reset and that more emphasis needs to be put on addressing the community fears and concerns, to make sure it’s a local response,” said Learmonth. “The outbreak will only really end when the community is engaged.”
The spread of harmful rumors have had tragic consequences for Congolese frontline workers, many of whom have been accused of profiting from the crisis. There have been more than 130 attacks on healthcare facilities, during which dozens of people have been killed.
Hygienist Mireille Kavira, 38, was offered a job in Beni General Hospital’s Ebola treatment centre two months ago, after the unrelated death of her husband, who had worked there before. As a mother of four children, she needs the money, but her new position led to Kavira’s neighbors shunning her.
“The community don’t like me because they understand I work where Ebola is,” she said. “They say ‘You got money for nothing, there is no Ebola, you are an accomplice.’”
One hundred and fifty miles south of Beni, the border city of Goma doesn’t yet have any confirmed Ebola cases, but misinformation is already being spread there too.
On a Saturday morning in Katoy, a poor neighborhood in the city’s north, a group of local leaders and volunteers gather in a compound. They’re discussing Ebola, how to avoid contracting it, and what to do if you experience symptoms. After reiterating the importance of regular hand-washing, the group leader reads out a hotline number to call if anyone comes across a suspected case. Then the attendees begin to discuss the rumors they have heard.
One volunteer said she heard foreigners will force people into Ebola treatment centers, claiming they have Ebola even if there are no symptoms. “You white people come for your own interest, to make money off Ebola,” she said, as others around her nodded.
“We really want to inform the population about Ebola so people know what it is and how to react, making sure they adopt the right attitudes when and if it reaches the city,” says Clarisse Amunazo, a health promoter for Médecins Sans Frontières. The medical charity have a team of 24 people involved in outreach to communities in Goma.
Traditional healers, who are more trusted and preferred by many Congolese from impoverished backgrounds, are being brought into the Ebola response too. They help identify and report new cases, and are also eligible for vaccinations as frontline workers.
However, Amunazo said that while healers are doing valuable work, there are still pockets of resistance, echoing many of the other fault lines in eastern DRC that have allowed rumors around Ebola to flourish. “Some (traditional healers) have their own beliefs and think they can cure any disease,” Amunazo said. “One told me he’s making his own cure for Ebola.”