Ebola: stigma

Friday was my first day off since arriving in Port Loko. I spent the day getting caught up on some reading I had started before leaving the U.S., listening to some great music, and going for a long walk. While I was out I bought some vicious looking chilies. I had seen okra in Freetown and hoped to find it here but didn't. Eventually, we're supposed to move into a house with a kitchen and I'll want to make gumbo.

 Saturday we discharged several Ebola survivors from the confirmed ward; people who had recovered from Ebola virus disease (EVD). That was the first time survivors had been discharged from this Ebola treatment unit (ETU) since it opened.



The door on the right is the exit from the confirmed ward. The one on the left is the exit from the suspect ward.

Although discharging Ebola survivors was a cause for celebration, I will not post photographs of patients on this blog or any other social media. Survivors in this epidemic and in previous epidemics have been stigmatized and even become the victims of violence.

During previous Ebola epidemics in Central Africa, survivors were turned away from their homes, abandoned by their spouses, and their children were not allowed to touch them. Survivors were harassed and suffered discrimination. Children whose parents died were left to fend for themselves, becoming heads of households (Davtyan et al., 2014; De Roo et al., 1998; Hewlett & Amola, 2003; Hewlett & Hewlett, 2005).

Health care personnel have also been stigmatized and victims of violence (Hewlett & Hewlett, 2005). Today I talked to some of the nurses at the ETU about their experiences. Several nurses told me that they had been forced to leave their homes. Another said her fiancée had stopped calling her.

 

 

Many of my colleagues from the U.S. have also experienced discrimination because of their work in the Ebola epidemic response. One of the physicians I worked with was asked not to return to her apartment for 21 days after leaving Sierra Leone. A firefighter I met was harassed by her coworkers. Several of my colleagues quit their jobs to come here after their employers refused to allow them time off. Several people have told me that they are not welcome at their families' holiday celebrations.

I am fortunate. My colleagues at the health department have been very supportive of my decision to come to West Africa to work in Ebola response. They also understand that my risk of becoming infected with the ebolavirus is extremely low and that, even if I were infected, I could not transmit the virus until I developed symptoms of EVD. As far as my fellow nurse epidemiologists are concerned, I could return to work immediately after I return to the U.S. from Sierra Leone, provided I take my temperature twice daily and report any symptoms to the local health jurisdiction, that is, my colleagues at the health department. In fact, I am one of the people who will monitor other travelers returning from countries affected by Ebola.

I am reminded of the stigmatization and abuse that people infected with HIV (or perceived to be infected with HIV) suffered at the beginning of the AIDS epidemic as the result of fear of disease and misunderstandings of its modes of transmission. EVD and AIDS are both frightening diseases. Both diseases tend to affect specific populations (Davtyan et al., 2014). There are no vaccines available for either HIV or Ebola. Unlike HIV infection, there are currently no drugs available to treat EVD.

I have tried to address concerns about EVD in these posts. All of the responses I have received so far have been very positive. I am extremely grateful for the support and prayers that I have received from my family, friends, colleagues, and community. I hope that the support that I have received will be extended to others who have made sacrifices to work in this epidemic.

References:

Davtyan, M., Brown, B., & Folayan, M. O. (2014). Addressing Ebola-related stigma: lessons learned from HIV/AIDS. Global Health Action, 7(26058). http://dx.doi.org/10.3402/gha.v7.26058.

De Roo, A. D., Ado, B., Rose, B., Guimard, Y., Fonck, K., & Colebunders, R. (1998). Aurvey among survivors of the 1995 Ebola epidemic in Kikwit, Democratic Republic of Congo: their feelings and experiences. Tropical Medicine and International Health, 3(11), 883-885.

Hewlett, B. L. & Hewlett, B. S. (2005). Providing care and facing death: nursing during Ebola outbreaks in Central Africa. Journal of Transcultural Nursing, 16(4), 289-297.

Hewlett, B. S. & Amola, R. P. (2003). Cultural contexts of Ebola in northern Uganda. Emerging Infectious Diseases, 9(10), 1242-1248.

Washington State Department of Health. (2014). Interim guidance for local health jurisdictions regarding follow-up of asymptomatic persons with potential exposure to the Ebola virus. http://www.doh.wa.gov/Portals/1/Documents/5100/420-132-Ebola-LHJ-MonitoringGuide.pdf.