Surviving Ebola is just the first step

For survivors in West Africa, the outbreak’s effects are still fresh, and some of its wounds run unimaginably deep

October 1, 2015 2:00AM ET

by Ashoka Mukpo   @unkyoka

About a year ago, while working as a freelance journalist in Liberia, I came down with the Ebola virus and was evacuated to a hospital in the United States. To put it mildly, it was an unpleasant experience. It took months for me to regain my full physical strength, turned me into a public figure for a brief but disorienting moment and left me frustrated and confused over how and when I became infected. I wouldn’t wish it on my worst enemy.

But nothing that my fellow Western survivors or I experienced compares with what West African survivors have endured during and after their illness. We were treated in world-class medical facilities and returned home to loving families and typically a degree of financial support while we regained our strength. Those who suffered the virus in Liberia, Sierra Leone and Guinea spent weeks in overcrowded facilities surrounded by death with the sparsest medical care possible. Their possessions were burned. Most lost close family members. A few lost nearly all their loved ones.

This week leaders of two of the countries hardest hit by the outbreaktook to the United Nations General Assembly stage to draw attention to the continuing recovery effort. “The Ebola virus disease outbreak has taken a heavy toll on the entire socioeconomic fabric of Sierra Leone. But with support from our international friends, we fought back,” said Sierra Leone’s President Ernest Bai Koroma. “Weak public health systems in individual countries threaten global health and well-being,” Liberia’s President Ellen Johnson Sirleaf in turn reminded the international community. “It is not beyond this body to find answers and respond, and we know that we must.”

The world has mostly moved on from Ebola. When it hits the headlines now, it’s either to celebrate a positive milestone in the fight or to remind us that the epidemic isn’t completely over. But for survivors in West Africa, the outbreak’s effects are still fresh, and some of its wounds run unimaginably deep. I’ve been back to Liberia twice since I recovered, and both times I’ve met with other survivors. It’s a diverse group. Some are former medical workers, others average people who were swept into a tragedy they often didn’t even understand.

For many of them, the process of moving on has been difficult. It’s painfully obvious that the trauma they experienced continues to hold some back from living full lives. One man I’ve met a few times lost more than 20 of his close family members, including his mother and siblings. I spoke with him a few weeks ago, on what would have been his sister’s birthday. He told me that he was in tears the whole day, saying he felt like an “empty room” and that he still dreams about his family.

In Western countries, when we experience trauma, we have a range of tools available to us to help work our way through the difficult moments they provoke. In Liberia those tools are nearly nonexistent. Those who bore the brunt of Ebola’s vicious touch are now in danger of being forgotten, forced to work through their pain and grief with little to no support. We spent hundreds of millions of dollars on preventing Ebola from destroying West Africa. We can find a little more to help its victims recover.

The Liberian Ministry of Health says there are three categories of need for Ebola survivors: medical, psychosocial and economic. Of the three, the one that’s receiving the most attention so far is the medical impact of what has been termed post-Ebola syndrome. I know from experience that its effects are real and can be quite painful. But in most cases, the medical effects tend to fade within a year or so. Joints heal, muscles return, and the body mends itself. It’s the latter two categories that are the most critical and have yet to be effectively addressed.

What was often lost in the media spectacle of Ebola and its horrors was the individual humanity of its victims.

Liberia’s Ministry of Health officials say that plans are in motion to conduct group therapy sessions across the country. This almost certainly won’t be enough. Survivors need targeted outreach to determine which of them are experiencing the worst forms of post-traumatic stress disorder and other mental health problems and therefore require intensive one-on-one treatment.

Korlia Bonarwolo, a former medical technician and one of the first Liberians to contract the virus, proposed a novel idea to me earlier this year that could help. Some of the more capable survivors could be trained in psychosocial outreach. This would create short-term employment for some survivors and harness their understanding of who is struggling the most. Under the supervision of experienced mental health professionals, this approach could help address the isolation and grief that some survivors say they feel.

Also key to helping Liberian survivors get back on their feet will be to provide some form of economic support. I’ve heard aid workers express the perplexing sentiment that livelihood assistance would create dependency or provoke resentment among those who didn’t suffer Ebola. While long-term handouts aren’t the solution, many Ebola patients had their belongings burned during their illness. For those who relied on petty trading or owned microbusinesses, the effect of this loss of capital has been devastating. Grants and loans that address these losses and those incurred by losing family support networks would greatly benefit many survivors.

Part of the problem is a lack of coordination among donors. While there have been some good initiatives by charities and development agencies, efforts have been piecemeal and disjointed. The challenge will be to facilitate coordinated efforts while not allowing the Liberian government to entirely dictate where money flows and how it is spent. An umbrella Survivor Network has been created with support from the Ministry of Health, but unaffiliated groups have complained that it is overly political and subject to manipulation by government officials. Working with independent groups would promote accountability and prevent conflict.

The Ministry of Health’s official figures reflect that there are just over 1,500 Ebola survivors in Liberia. World Health Organization statistics show that there were 5,030 probable or confirmed Ebola cases. This would mean the death rate was more than 70 percent. This seems improbable, given that many treatment facilities reported survival rates of 50 to 60 percent, raising the possibility that the number of survivors has been underestimated. Some may have fallen through the cracks and are hence unlikely to receive support. A comprehensive effort to determine how many Ebola survivors there are in Liberia is a needed first step toward developing a plan to help them recover.

What was often lost in the media spectacle of Ebola and its horrors was the individual humanity of its victims. The sight of suffering Africans provoked concern and fear across the world, but it rarely allowed us to see the broad scope of survivors’ emotions and personalities. For many of them, walking out the doors of a treatment unit was a bittersweet experience, and the international celebration of victory over the outbreak made them feel only more alone and grief-stricken over their losses. The suffering they’ve been through is impossible for most of us to understand, but what we can do is find ways to help them make the most of their second chance at life.