Ebola survivors struggle to return to normal lives: what I found out in Sierra Leone and Liberia

“During the Ebola epidemic of 2014 to 2016, Musu, a resident of Monrovia, Liberia contracted the Ebola virus along with her husband, five sons and daughter. A few weeks later, six members of her family died. Musu and her youngest son survived. Since then, their lives have not been the same. Her husband was the family’s sole breadwinner. Now a widow and a single parent, Musu struggles to make ends meet. As she put it, “There is no one here to help besides God. No boyfriend. No father. I am the father, the mother, the uncle, and the brother. At the place we are renting, we can’t even find food to eat.” Musu is one of the many survivors who recovered from the world’s largest Ebola epidemic. The epidemic started as a localised disease outbreak in the village of Meliandou in Guinea but spread to neighbouring Liberia and Sierra Leone. Over the course of three years, the disease infected 28,600 people. Approximately 11,000 of them died while 17,000 survived. On 9 June 2016, the World Health Organization announced the official end of the Ebola epidemic in Liberia. Compared to the widespread media coverage of the epidemic when it started, news reports on its aftermath have been limited. As a result, very few people know that Ebola survivors have struggled to continue with their lives since the end of the epidemic. These survivors include widows like Musu, orphans who are now homeless, and thousands of people who are now blind or have permanent vision problems. Read more: Ebola survivors can lose their eyesight. What we’re doing to prevent it I am a social demographer who studies health and population trends. My recent book Life After Epidemics: Ebola Survivors and the Social Dimensions of Recovery documents many of these experiences. Based on interviews with 250 Ebola survivors in Liberia and Sierra Leone, I set about trying to understand why many survivors live in worse conditions than before the epidemic, and what’s preventing them from returning to their normal lives. Understanding these issues is a first step towards developing solutions to the problems currently faced by Ebola survivors. Learning about their experiences can prevent these problems from occurring among survivors of future epidemics. Medical versus social responses to epidemics The process of determining what went wrong begins by understanding the contrast between two types of responses to epidemics. The first is the medical response, which emphasises the use of clinical medicine to save lives and care for infected patients. The second is the social response, which addresses issues such as the provision of sustainable livelihoods, supporting orphans, and integrating survivors into their communities. Policy makers placed a greater priority on short-term medical responses to the consequences of the Ebola epidemic than on long-term social responses. The main objective of my research is to examine how Ebola survivors have been affected by that emphasis. I used information from interviews and other sources to assess how their health, sources of livelihood, and family lives have changed since the end of the epidemic. The research provides evidence on the ways in which the limited investment in social responses continues to negatively affect the lives of survivors. For example, there are no programmes that provide them with comprehensive access to healthcare, even though many of them are either blind, suffer from musculoskeletal conditions, have neurological conditions, or live with other long-term side effects of the virus. It also describes the experiences of farmers in poor health, who can no longer till their land, and hunters who can no longer see. They are among the many survivors who were previously self-employed but have lost their sources of livelihood. With the limited investment in social responses, the stigma of Ebola continues to thrive in local communities. As a result, the social interactions of Ebola survivors are often plagued by the fears of people who believe they are still infected. These fears caused business owners to lose clients and contributed to the end of marriages. Many survivors no longer receive invitations to attend social events such as weddings and child naming ceremonies. In some cases, their children have also lost playmates after neighbours banned their children from playing with the children of Ebola survivors. Humanitarian organisations played a major role in containing the spread of the disease during the epidemic. Some of their policies had unintended consequences, however, that have added to the problems of patients who survived. For example, the practice of burning the belongings of infected patients to prevent further transmission of the virus has increased economic hardship among many survivors. The burning process led to financial losses among survivors who kept their savings under their mattresses, lost farming tools, and had to pay for equipment borrowed from neighbours that was also destroyed. Some of the messages employed in public health campaigns used to contain the spread of the virus during the epidemic have also had unintended consequences. These campaigns warned the public to avoid touching infected people as a way of stopping transmission of the disease, because there was no cure for Ebola. Since the end of the epidemic, many people in local communities have continued to avoid touching survivors. They question how survivors can claim to be Ebola-free when the public was told that the disease had no cure. Why Ebola survivors feel abandoned Hearing the stories of the survivors made it clear that many of them felt abandoned. The visits from community leaders have stopped. The specialised care they received from hospitals has been discontinued. Many of the promises of political leaders who claimed they would provide resources to support their recovery remain unfulfilled. Some of the resources provided by donors were lost to fraud . Meanwhile, Ebola survivors continue to be affected by the irreversible losses they experienced a decade ago. These experiences and the lack of attention to their social circumstances still define their lives. Policy makers will need to give equal attention to medical and social issues when responding to future epidemics. This will require sustained investments to improve the lives of survivors long after we celebrate the end of epidemics. Kevin J.A. Thomas received funding from the Andrew Carnegie Fellows Program while conducting the study described in this article.

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