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Life After Ebola: Pain, Flashbacks, and 'Post-Ebola Syndrome'

We spoke with several former patients experiencing reverberations of the body's battle against the disease, including severe joint and body pain, headaches, and traumatic flashbacks.

by Kayla Ruble
Mar 21 2015, 10:15pm

Image via Kayla Ruble/VICE News

On October 21, shortly after his wife and young son contracted Ebola, Henry Tony developed symptoms of the deadly virus and was admitted to a treatment center on the outskirts of Monrovia. On a gray morning nearly five months later — having lost his spouse and child, as well as his mother and grandmother, to the hemorrhagic fever — Tony again arrived at the grounds of the treatment facility operated by Doctors Without Borders (MSF), this time as a survivor.

Tony is one of the more than 5,000 people in Liberia who were able to beat the virus that has claimed some 4,200 lives in the country, and which has infected more than 24,000 people over the last 15 months in Liberia and neighboring Guinea and Sierra Leone. He traveled to the center to meet with other survivors.

The 31-year-old is one of countless former patients who experience lingering side effects despite having officially recovered. These include severe joint and body pain, headaches, and traumatic flashbacks — reverberations of his body's battle against the disease.

"Ebola changed most of us," Tony told VICE News. He is now a member of Liberia's recently founded Ebola Survivors Network. "When you come across different survivors, you find problems are different."

As the deadliest Ebola outbreak in history winds down in Liberia and, to a lesser extent, in Guinea and Sierra Leone, the governments of these countries are now faced with an unprecedented number of survivors, virtually all of whom are dealing with some level of trauma, stigma, physical distress, or financial hardship.

Tony complains of intense pain, and describes distressing memories of his illness and his family that often overtake him when he is alone. He thinks of his wife, who he describes as his best friend, and of his two-month-old son. Besides the emotional burden, these flashbacks often develop into agonizing headaches.

"When I'm lonely my mind can bring on some of these things," he explained. "No one contracted the virus and remained the same."

Members from the survivor's network during a self-organized meeting on the grounds of MSF's ELWA 3 treatment center. The group is not affiliated with an international aid organizations and was founded by survivors themselves. Afterwards a group of the survivors from MSF stopped to talk with clinic staff. (Photos by Kayla Ruble)

Others describe these flashbacks as almost an out of body experience. Survivor Oliver Wayee experienced a particularly traumatic bout with the virus back in August. After showing signs of recovery, Wayee unexpectedly took a turn for the worse. He went blind for four days and began experiencing terrible headaches, but he also started to act out, getting aggressive with doctors and other patients.

"I went mad — I started annoying doctors in the Ebola treatment unit. The virus had claimed my head," he said, describing scenes where he threw clothes and disturbed patients. Now, when he has flashbacks and thinks about the trauma, his mind switches to those scenes.

"Right now as I speak to you right now, I'm more than trauma," added Wayee, who now experiences severe body pain and is routinely treated with pain medication every 17 days.

According to members of the MSF health team that manages the treatment center, Tony's "post-Ebola syndrome" has become a common malady, and one of the main challenges that the country's recovery effort needs to address. Experts are just beginning to grasp the extent of the problem.

MSF has established a special clinic at the treatment center to focus on the different complications experienced by survivors. Penni Cox, a mental health activity manager who is overseeing operations at the new clinic, told VICE News that the syndrome takes the form of physical symptoms as well as psychological issues.

'No one contracted the virus and remained the same.'

"The post-Ebola syndrome is very real — joint pain, headaches, blurred vision," she said, rattling off a host of indicators. Cox noted that there have never been so many Ebola survivors at once. "That's why this is new ground."

As members of the Ebola Survivor's Network gathered to meet at the MSF facility where they were all treated, some of the post-Ebola symptoms were immediately visible.

Dash Dukuly, a slender middle-aged man who contracted the virus at a Pentecostal Church service in late August, wears large brown sunglasses to protect his eyes. Since recovering, he has experienced the same joint pain that others have described, but the sickness also appears to have affected his eyesight. Doctors told him that this sensitivity is a consequence of the high fever caused by Ebola.

"I can see, but not clear enough. It's like dew in my eye," Dukuly told VICE News. "I cannot really explain how the pain is like, because the pain is very terrible."

According to MSF psychosocial team member Emmanuel Ballah, who has been providing mental health services to victims and their families since the outbreak's height in August, these post-Ebola problems are sometimes reminiscent of the same symptoms the survivor experienced while infected.

"They know they are negative — now I see these symptoms coming again. Am I still negative?" he said, describing the confusion the ailments can prompt in people who have otherwise recovered. Alarmed, some rush themselves to the hospital for care. These physical symptoms are real more often than not, but fear of the virus can also inspire psychosomatic illnesses. "Psychologically it has this huge impact," Ballah noted.

Cox described the syndrome as one of the most unique trends the MSF team has observed among the outbreak's survivors. The team is particularly intrigued by the apparent connection between physical and psychological effects; for example, traumatic flashbacks leading to headaches. Coping with physical pain can also cause its own issues.

When a survivor is identified by teams in the field or voluntarily decides to visit MSF's clinic — a tent erected outside of the treatment center that just months ago overflowed with Ebola patients — they are processed by the psychosocial team, who books the appointment and does an evaluation to determine the patient's needs. Healthcare workers must determine whether the patient is exhibiting symptoms of depression or post-traumatic stress disorder, or whether they need to see a specialist, like an eye doctor. Survivors are only eligible for admission if they were one of the 512 individuals who were originally treated at the facility.

A nurse assesses an Ebola survivor at MSF's survivor clinic on the grounds of the ELWA3 treatment center in Monrovia. (Photo via MSF)

The MSF team is not simply monitoring for physical ailments and psychological issues related to post-Ebola syndrome. Since August, the staff has been working to provide a holistic approach that takes into account non-medical problems as well, such as the severe social stigma that many survivors have had to endure.

While many Liberians have come to understand the facts of the disease, there are still those who discriminate against survivors and reject them out of fear of infection. Tony was evicted from his home and has been unable to regain work as a driver and mechanic.

At the morning meeting, Monrovia resident and Survivor Network member Mamie Kiawu said that some of her relatives avoid her house completely. Having lost her husband to the virus, she claims there is no one to rely on for help, and that her children have been taunted at school.

"I would like to go out and live life in a different country in peace," she told VICE News. "I'm not living free in the country here. Everything is hard on me."

Survivor Mamie Kiawu holds her certificate of discharge. Patients receive this after they officially test negative for the virus and are allowed to return home. Many carry this paper around with them for identification purposes. (Photo by Kayla Ruble.)

Deaths caused by Ebola decimated families, but the risks of infection also drove many apart. Some former patients might resent their relatives for withdrawing from them while ill. Taking care of loved ones in need is an important value among Liberians, but the Ebola virus made doing so a dangerous undertaking.

But teams from MSF and a host of other aid organizations are working hard to get out into the communities to create awareness, reduce stigmatization, and rebuild relationships. The survivors have been key contributors to these grassroots efforts in explaining their experiences to community members and intervening on behalf of other survivors. But prejudice against the formerly ill is one aspect of a wider difficulty Liberians collectively face. From healthcare workers to orphans to villagers who saw the bodies of their dead relatives and neighbors in the streets, it is clear that much of the population has experienced some degree of trauma that will need to be treated.

"The devastation that has happened here, the extreme loss this country has gone through, the grief the people are sitting with," Cox said. "I don't know if the world knows the magnitude of that.

"When one comes here and you actually experience [it] and you see the cases, case after case. The orphans that don't have scholarships or the ability to go to school. You see the mothers that are looking after nine or 10 children and they themselves don't have running water," she added. "These are regular cases, and you see the need. Then it really hits home."

The effort within Liberia to assist survivors, restore communities, and reunite families is operating in uncharted territory of a sort. The scale of the infections and the rate of death had never been seen before, and the post-Ebola syndrome has likewise never been so much in evidence. Much of the work requires flexibility and the ability to identify what is working and what is not.

Cox believes that it is equally important to attend to people who were not infected by the virus but who nevertheless felt its impact.

"We have to help the community embrace the fact that everyone was dealing with Ebola in some way," she said. "Everyone needs to have the acknowledgement that, even though I was not a survivor, I was affected by Ebola."

As groups like MSF evaluate the best way to treat survivors and their ailments, establishing a model that can be maintained after the aid workers pack up and leave is essential. Cox said this kind of empowerment is the main aim, and she hopes the survivor's clinic is a tool that can stay in place.

"The reality is we don't have a lot of time, but I think if one can plant an idea then it's something," Cox explained. "[We're] moving into a phase of trying to empower the people that we are in touch with to go and work in the communities."

The establishment of groups such as the Ebola Survivors Network indicate this sort of empowerment is taking hold. The group itself was founded by survivors back in October. As one of the organizations leaders, Tony not only meets with MSF to discuss what's working at the survivor clinic, but he is also looking to have an impact on national policy.

One of the main goals in the coming weeks is to increase government support. Many survivors told VICE News they have yet to receive any kind of financial or direct assistance from authorities. Tony would also like their health needs to become a government priority. This will be key as West Africa's Ebola survivors enter uncharted territory — life after Ebola. With an unprecedented number of survivors, most between the ages of 15 and 44, some may have to live with the impacts of the virus for decades.

"After one year will that person remain same? How will the other people be? In two years time how will they be?" Tony asked. "We need help."

Follow Kayla Ruble on Twitter: @RubleKB