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For Ebola survivors in Congo, stigma and mental health issues loom large

‘Even my wife and my friends don’t like me. I should have been killed from Ebola.’

15-year-old Shakina from Butembo lost two brothers and her father from Ebola. "I just want to forget that they died so I can be free," she said.
15-year-old Shakina from Butembo lost two brothers and her father from Ebola. "I just want to forget that they died so I can be free," she said. (Tanya Bindra/UNICEF)

Anselme Kambale Mungwayitheka thought he was going to die of Ebola a year ago. After contracting the virus and being admitted to an isolation ward, the 40-year-old nurse didn’t think he would make it out alive. Now cured, he says he also feels cursed.

The father of three, who still works at an Ebola treatment centre during the day, lies awake at night questioning why even those closest to him have been reluctant to come near him: “I thought, why am I alive? Even my wife and my friends don’t like me. I should have been killed from Ebola.”

The Democratic Republic of Congo’s deadliest ever Ebola outbreak has shown signs of slowing in recent weeks despite a spike in cases reported yesterday. But stigma against survivors – who can be shunned by loved ones, colleagues, and neighbours – and a lack of mental health support mean the virus will haunt many of them long after the epidemic is officially declared over.

This outbreak has been raging for more than a year now and has cost more than 2,200 lives. Although treatment advances have contributed to a higher than ever proportion of survivors – more than 1,000 – there is growing concern that the stigma of the disease has not been adequately addressed as part of the response.

Although the 2014-2016 West African outbreak killed more people, the latest outbreak has posed unique challenges.

It is the first to occur in an active conflict zone, compounding existing trauma with the distress of Ebola.

Eastern Congo is home to more than 100 armed groups. Attacks against health workers – amid rumours that the virus isn’t real or that it’s a money-making venture for some – have led several times to the suspension of Ebola response operations.

However, according to survivors and aid officials involved in operations in Congo, there is also a lack of trained mental health staff in the country and an insufficient mental health component within the response.

For example, in Beni, one of the major towns in the outbreak zone, the government’s psychosocial commission, which works with Ebola survivors and their families, has 115 employees, including 15 trained psychologists. The employees receive three days of training from the commission before they start, followed by monthly information sessions.

But the Ministry of Health estimates it needs at least another 50 trained psychologists between Beni and nearby Butembo to properly cover the area.

“It’s not sufficient,” said Justin Kakule Kasai, president of the psychosocial commission.

My wife didn’t trust that I was cured, and said we couldn’t share a bed.

Health workers visit survivors on average once a month for 30 minutes. Ebola orphans – of which there are almost 2,500 at risk of being stigmatised, isolated, or abandoned according to UNICEF – get more frequent check-ins: once a week for 15 to 25 minutes.

International aid groups are trying to fill the gap, with UNICEF training more than 1,000 psychologists and psychosocial workers since the beginning of the epidemic – but reaching affected communities has proved challenging amid bouts of violence.

‘Why are people so afraid of me?’

After more than two weeks in isolation, Mungwayitheka said he returned home to a family who felt more like strangers: “My wife didn’t trust that I was cured, and said we couldn’t share a bed.”

As a nurse, Mungwayitheka’s friends used to drop by the house for medical advice, but they have stopped coming over. “I felt useless,” he said. “I kept asking why are people so afraid of me?”

It took three weeks speaking to a psychologist twice a day before his wife let him back into the bedroom, and months of meetings with community members before people started feeling comfortable with him.

While things have improved, there is still a long way to go, and a stigma around the disease persists.

One study from the 2014-2016 West Africa outbreak showed that mental health issues for more than 17,000 survivors persisted long after the outbreak was over. A survey from July 2015 with more than 3,500 people found that 76 percent of people had post-traumatic stress disorder, and 48 percent suffered from anxiety and depression.

“You already have a population in North Kivu and Ituri that had ongoing baseline trauma,” said Sara Phillip, Ebola emergency coordinator for the international NGO Medair, referring to conflict-riven provinces in the outbreak zone. “They’re living in areas with intense insecurity with poor health access and water – and then you have something like Ebola, which is incredibly traumatic on top of that.”

Additional trauma, such as conflict, can increase feelings of hopelessness, explained Melodie Safieddine, a clinical psychologist who has worked with trauma victims in war zones and people who have suffered from disease. “Without any proper short or long-term psychological support, there's a higher chance that the individual… gets overwhelmed and (is) not able to face the crisis.”

I think one of the main gaps that exists is finding income-generating activities for those cases whose livelihoods have been affected – directly or indirectly.

A recent study published in The Lancet – based on research after an earlier outbreak in Guinea – also suggests that survivors are five times more likely to die than the rest of the population in the first year of recovery, due probably to severe liver damage.

The financial burden

Survivors also worry how they will fare economically once the outbreak is over.

“I think one of the main gaps that exists is finding income-generating activities for those cases whose livelihoods have been affected – directly or indirectly,” said Ana Palao, Ebola coordinator for the emergency team in Congo with the Danish Refugee Council.

Survivors can be financially affected if the breadwinner in their family dies, or if stigma around the disease prevents them from going back to work.

Some government employees have had a difficult time going back to work, said Yvonne Duagani Masika, a psychologist with UNICEF, citing cases of managers trying to dissuade teachers from returning for fear the school’s reputation could be compromised.

Read more → Survival lessons for Congo in the aftershock of West Africa’s Ebola crisis

Although a case last week raised concerns to the contrary, survivors are believed to become immune to the virus. As a result, many end up working in Ebola treatment centres, including nurseries where they care for children whose parents are sick. But while the outbreak is providing work now for these survivors, there may be nothing for them to do once it is over.

Those who have returned to their old jobs can also find the physical demands challenging, as Ebola is known for inflicting intense bone and muscle pain after a person recovers.

“Your body’s lazy; it doesn’t have the same power,” said Nguru Kisura standing in a health clinic in Biakato in Ituri province – the outbreak’s latest hotspot and the site of recent attacks by militia last month. The Ebola survivor works as a nurse and said his body isn’t as strong as it used to be.

Local self-help

Doctors at hospitals can be reticent to treat Ebola survivors, and some private clinics refuse to let female survivors give birth, making them go to treatment centres instead, said Mungwayitheka. He wants response organisations to do more community sensitisation around how to deal with survivors.

Last November, a commission led by survivors was created to help people find jobs and combat stigma, said Maurice Kakule Mutsunga, who heads the group. As the outbreak’s first survivor, he said he has seen many people suffering from depression and post-traumatic stress disorder.

Health experts are hoping that as the number of survivors grows, the stigma may lessen. As medical needs dwindle, it’s also hoped that more resources will be directed to address mental health needs.

International aid group ALIMA, for example, is planning to provide survivors with at least one consultation a month, which could be ramped up to once every two weeks, said Martin Tournadre, a health programme coordinator for the group.

It also plans to implement a community-based monitoring system where locals, supported by ALIMA, can visit survivors and report back to the psychosocial team if there are any issues. But neither programme has started as the group has been focused purely on the medical response.

In the meantime, survivors still struggle to fit in.

“I don’t have any problems with Ebola survivors,” said Kasereka Saghasa, a hotel security guard in Beni.

He admitted, however, that he had never actually met one.

Standing steps away from him, Ebola survivor Mungwayitheka remained silent.

“I didn’t want to say anything,” he said. “I wasn’t sure how he’d react.”

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TNH used transportation provided by the UN peacekeeping mission in Congo, MONUSCO.

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