Surviving Covid-19, living with its stigma

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Misinformation continues to intensify prejudice against survivors of the coronavirus in Nigeria; they continue to suffer from a wide-range of discriminations – being ostracized by their families, profiled in their communities as well as facing cyberbullying

 

A security guard administers hand sanitiser to a visitor to a state hospital in Lagos, on February 28, 2020. Photo by PIUS UTOMI EKPEI/AFP via Getty Images

 

Under the cover of the enveloping darkness over Lagos, the slim, tall and brown-skinned lady in her mid-30s wandered along the iconic 12km-long Third Mainland Bridge, apparently looking for the best spot to carry out a mission she had contended with for many days now: jump into the lagoon and end her life for good. Suddenly, out of nowhere in the eerily calm night, a mysterious male voice screamed in Yoruba language: “What are you doing here? No nah. Leave!”

She temporarily halted her mission, expecting the man, whose appearance was typical of someone insane, to walk away so she would go ahead but the man stayed put! The deadlock will last over one-and-a-half hours during which the weird man even tried to offer her a sachet of ‘pure’ water, in his persistent bid to dissuade her from carrying out her ill-fated mission. “I was there for over an hour waiting for him to leave me and when he didn’t, I decided to leave for home and come back later,” she recalls many months after the unfortunate incident.

Motosinoluwa ‘Tosin’ Afolaranmi, an entrepreneur and creative designer, had been through a lot in the past one year: she lost her job at an event management company in April 2020, contracted Covid-19 same month and got cured of the virus in May but has continued to grapple with its traumatizing consequences including nearly losing her life to suicide.

Having lost her job to the pandemic and its resultant lockdowns, Tosin dedicated most of her time to her volunteer work with a Lagos-based charity – distributing relief materials to the poorest of the poor around Lagos Island who had been disproportionately affected by the lockdowns. Tosin believes she contracted the dreaded virus during one of those community outreaches. “We were taking all necessary precautionary measures like using face masks and hand gloves, which we kept changing from time to time. Seriously, that it still happened is something I still can’t understand.”

 

Tosin’s traumatizing ordeal

Tosin’s trials began on Thursday, April 16, 2020, when she started exhibiting Covid-19 symptoms: fever, diarrhea and body pains. “As usual, I took paracetamol with the presumption that by the time I woke up in the morning, I would be fine. I didn’t have the slightest inkling that it was coronavirus. By the time I woke up the following morning, I was experiencing aches all over my body, had lost my sense of smell and was already having shortness of breath. When I informed my outreach colleagues they advised me to use chloroquine, tetracycline, ginger, garlic and turmeric.”

By Monday when Tosin managed to convey herself to the Lagos University Teaching Hospital (LUTH), her condition had so much deteriorated that she could hardly breathe anymore. “While waiting for my sample to be taken, I fainted but they managed to revive me. Because there was no bed space, I was asked to go home and wait for my test results. Later that day, my outreach coordinator managed to reach out to the Lagos Covid-19 task force who mobilized an ambulance to convey me to a holding centre for suspected Covid-19 patients. Two days later when my test returned positive I was taken to an isolation centre where treatment began.”

Unknown to Tosin, as she was being moved into the ambulance from her home to the holding centre in the dead of the night, a neighbor who was awake at the time was video recording her and eventually posted the video on Facebook. Her second ordeal began as soon she was back home.

“I lived in a small community where everyone knew each other; therefore, everyone was friends with one another – in real life, and on Facebook and Instagram. So, even before I came back home, everyone knew what had happened to me. Someone saw me and yelled: ‘Aunty Corona, welcome o!’ Parents had also been telling their children not to speak to me when I returned. When I met one of the children I liked to play with, he was like: ‘My Mummy said I should not play with you, that you have coronavirus and if I play with you, I will die.’ Once more, I went to buy water at a grocery shop and another customer retorted: ‘You better don’t attend to her, she has coronavirus.’”

As she struggled with stigma from members of her community, Tosin was also battling another challenge: a backlash from members of her immediate family who were not happy with the video interview she granted to BBC Yoruba before leaving the Isolation centre, which eventually went viral on social media. In the interview, Tosin had tried to change the misconception of Covid-19 being a ‘rich man’s disease’, the fact that plants such as garlic, turmeric and ginger do not cure the disease as well as the fact that Covid-19 was not a death sentence, since she was cured of it.

Moreover, after being cured of Covid-19, Tosin was at a bank on the Lagos Island where she realized bank customers queuing outside of the bank were not observing social distancing and were either not wearing a face mask or had pull it down to their jaws. “I was still very paranoid at the time so I asked them why they were not observing protective measures and someone was like: ‘There is no corona jare!’ I was on a phone call with a friend at the time who asked me to tell them I had personally survived Covid-19 and just got out of Isolation centre where I almost died. To my shock, before I finished, there was no one around me: everyone had ran away.

“I was facing stigma from people in my community and also from my family members which made me feel there was no meaning to my life anymore and so I should just end it. There was bashing from within and from outside of my family but it was the bashing from within my family that made me wanted to end it,” recalls Tosin who eventually had to vacate her neighborhood on the Lagos Island when the bullying of her became unbearable. “I am still on medication and continues to talk to a psychiatrist.”

For Tosin, despite all the difficulties she went through in successfully battling Covid-19, the fallout of surviving the rampaging disease was much more traumatic than actually dealing with the virus. “When someone comes out to say I had this disease but survived it, you should see them as giving you hope since others were not so lucky to have survived it. Covid-19 is not a death sentence and if people survived it, you shouldn’t be the ones to put them to death with your actions: you should not be the ones to kill them,” her message to those who stigmatize Covid-19 survivors.

 

Musa’s bitter-sweet experience

Like Tosin, thirty-seven year old Mohammed Musa is a Covid-19 survivor who contracted the virus in the course of his work as a driver for the Kano State Covid-19 Task Force. At the onset of the pandemic in April 2020, Musa, who had been working as a driver at the Kano State Ministry of Health since 2017, was deployed to the Covid-19 task force. After most of the members of the task force had got infected with the virus, he was along with other drivers asked to get tested for the virus, even though he was not exhibiting any symptoms of Covid-19.

Musa eventually tested positive for the virus and was isolated and treated. His tribulations began after he was discharged from the Isolation center, having been cured of the virus. “Upon returning home, I began to face stigma. Whenever one of my neighbors who lives in my street sees me approaching him, he would either pretend to be on a phone call or turn back so as not to talk to me. Others in the neighborhood also began to avoid me such that if I went to our majalisa  [ a spot where men hangout]  people will be leaving one after the other, under different pretenses.”

Almost one year after surviving the disease, Musa says he is still being stigmatized by people including a colleague in his workplace. “Up to today, there is a particular man who will not stand side by side with me in the mosque during prayers, in my place of work. Again, even today, I was seated at our majalisa when a group of women came to pass by and I could see one of them pointing at me, saying to the others what I presumed was: ‘This is the man that contracted Covid-19.’ She then covered her nose, apparently in an attempt not to contract the virus from me. I simply laugh off the issue.”

Like Tosin, Musa had after surviving Covid-19 granted an interview to Arewa 24, the most popular and widely viewed Hausa language satellite TV channel, which had become a subject of a video campaign against the virus. Contrastingly, the Arewa 24 interview made Musa popular; for him, the Covid-19 experience has been a bitter-sweet one. “If there is any public event and I happen to be there, people will be coming to shake my hands and take photos with me. Recently, I was at an eatery in Kaduna and when the owner recognized me she did not accept any payment from me. In fact, we exchanged phone numbers and are now friends.”

 

Asiyanbi’s contrasting experience

For Dr Oladapo Asiyanbi, a public health physician who heads the medical team at Ikeja Local Government Area (LGA) of Lagos State, surviving Covid-19 was anything but nasty or traumatic. Dr Asiyanbi, who was at the same Isolation centre with Tosin and who also produced a video while at the centre explaining why Covid-19 was not a hoax, got an entirely contrasting reaction to what Tosin had received for publicly revealing her Covid-19 status.

“A lot of people who didn’t believe in Covid-19 began to do so after watching my video from the isolation centre. They were like: ‘If this disease can infect the whole head of the medical team of an LGA then it must be real.’ So, a lot of people in my community began to wear face mask as well as observing social distancing. By the time I came out of isolation, I had become more popular than I was before, people were coming to ask me questions about Covid-19. I think it was because I was a doctor that they believed me,” narrates Asiyanbi.

Dr Asiyanbi believes Tosin was stigmatized and ostracized because she was a young lady who people did not see as someone they could trust. “People believe those they trust, hence the need to leverage community gatekeepers – headmasters, religious leaders and officials of groups such as road transport workers as well as entertainers who enjoy street credibility, in the campaign against the virus. If People like Wizkid and Davido or Naira Marley speak, people will tend to believe them more than they would believe the governor or president. If someone like Daddy Showkey will talk to the people of the ghetto (who see him as one of them) they will believe the message.”

 

Misinformation fuelling stigma against Covid-19 survivors

Covid-19 misinformation has continued to intensify prejudice against survivors of the virus such as Tosin and Musa. Those who survived the disease continue to suffer from a wide-range of discriminations – being ostracized by their families and regarded as a bad omen, being profiled in their communities as well as facing cyberbullying. The high-level of unverified messages being spread largely on the social media ultimately means the opinion of more and more people is being shaped by misinformed thoughts and beliefs about Covid-19.

Kemi Busari, editor of Dubawa, a fact checking initiative under the Premium Times Centre for Investigative Journalism (PTCIJ), states that misinformation plays a great role in how people treat those who are infected with the virus. Busari says misinformed people tend to unconsciously spread wrong information on the coronavirus, unmindful of the implications of their actions, which oftentimes, become the basis for which survivors are stigmatized.

“A major reason why survivors were and are still being stigmatized is misconception and lack of awareness about the disease. Many believe once you are infected, it’s like a death sentence and because of that mindset; they still believe that if they get into contact with someone that had been infected with Covid-19 in the past, they would be infected with the virus. Superstitious beliefs and mistrust of the government also fuel misinformation about the virus and stigma against coronavirus survivors,” Busari explains.

Equally as dangerous as misinformation is the lack of access to verified and accurate information on Covid-19, which is the basis upon which misinformation thrives. The lack of access to verified information on Covid-19 is what breeds misinformation about it and subsequently leads to stigma against survivors of the devastating disease.

David Ajikobi, the Nigeria editor at Africa Check, Africa’s pioneer fact checking organization, blames the widespread stigmatization of Covid-19 survivors on sheer ignorance. “A major misinformation that was spreading was that Covid-19 was a rich man’s disease and that God was using the disease to punish evildoers and bad politicians in government. The death of a top Nigerian government official from the virus further entrenched people’s ignorance and led to more stigma against the survivors of the virus.”

Relatedly, Olayide Akanni, executive director of Journalists Against AIDS (JAAIDS) thinks the fact that many people believe they will be infected if they associate with Covid-19 survivors is due to myths and misconceptions about the disease. “Getting survivors of the disease to be at the forefront of creating awareness about the virus really helped in curtailing stigma against HIV positive persons. Similarly, we have had instances where people who survived Covid-19 appeared in videos telling people about the virus and dispelling various myths in circulation, which has helped. If families of survivors will also speak out to say their family members who had undergone treatment are now fine, that would go a long way in minimizing the stigma.”

 

Social media as purveyor of Covid-19 misinformation

Thanks to its user-friendliness and low-cost nature, social media has become the people’s major source of information during the pandemic.  Subsequently, social media is an unrivalled platform for spread of all sorts of misinformation, conspiracy theories and disinformation on Covid-19. Spiteful, fake and unfounded posts and comments on social media have significantly contributed to jeopardizing the fight against the pandemic in Nigeria.

Dr Chinonso Egemba, known as Aproko Doctor on social media, is a trained medical doctor who communicates health behavioral change on social media with over 1 million followers on Twitter alone. Dr Egemba believes the high dependence on social media for Covid-19 information has made social media platforms such as Facebook, Twitter and WhatsApp, the major purveyors of information and misinformation about Covid-19.

“Misinformation was on a large scale at the height of the pandemic.  A person could post anything without proper verification which may end up reaching a large audience, at which point it becomes difficult to control. The fact that a huge population of Nigerians are active users of the social media makes it their major source of information; the actual impact of Covid-19 misinformation is much bigger than we envisage,” said Dr Egemba.

Dr Kabiru Lawanti, a lecturer in Mass Communication at the Ahmadu Bello University, (ABU) Zaria agrees with Egemba. He believes the lack of gatekeeping in the social media had led to widespread of misinformation and consequently stigmatization of Covid-19 survivors, adding that social media platforms are pacesetters in terms of the spread of misinformation about the coronavirus disease. He said lack of access to verifiable information on Covid-19 was why people fall prey to misleading messages in the social media space.

“With the advent of social media, most people can now easily access information from the internet. However, sometimes these kinds of information do not pass through the process of gatekeeping which is the reason why we have a lot of misinformation flying around. Lack of access to correct information also leads to misinformation and disinformation, a person that hardly gets any correct information is more likely to believe whatever information he or she comes in to contact with,” argue Dr Lawanti.

 

Sufferers hiding Covid-19 status to avoid stigma

To avoid being stigmatized in society, many Covid-19 infected persons have resorted to hiding their true Covid-19 identity, do not seek medical care, and end up spreading the disease to their family members, neighbours and co-workers. This is contributing to further unchecked spread of the highly contagious disease in Nigeria as people resort to self-care and medication – against presenting themselves for isolation and proper treatment.

“At the beginning of the pandemic, because of the extent of the spread of misinformation and the fear of being ostracized, many infected persons refused to disclose their complete health information to health personnel. Instead, they would complain of having malaria and other related ailments which led to the loss of lives of many health personnel who had ignorantly treated Covid-19 patients that had deliberately withheld information about their health status, even as they were exhibiting obvious symptoms of the disease,” said Lanre Arogundade, executive director of the International Press Centre (IPC).

Similarly, Dr Ifeanyi Nsofor, director of policy and advocacy at Nigeria Health Watch (NHW), which in April 2020 launched #MyCOVID19NaijaStory, a social media campaign to counteract COVID-19 denialism in Nigeria, believes stigmatization of Covid-19 survivors on the basis of misinformed thoughts had made it difficult for coronavirus advocacy to achieve its desired results in the country. As a result, Dr Nsofor said, Covid-19 survivors were not willing to share information necessary to convince others on the reality of the disease, for fear of being ostracized.

“Using survivors’ stories make advocacy against Covid-19 easier however due to the persistent stigma against survivors, they keep the information to themselves for fear of being ridiculed. And when others who have symptoms of the virus see the victimization been meted on survivors, they won’t be willing to open up because of the apparent derision that doing so will lead to. This further complicates the fight against the virus,” Dr Nsofor explains.

Atinuke Akande, communications manager at NHW, said their findings through the #MyCOVID19NaijaStory revealed Covid-19 survivors faced stigma from their families and friends; hence, many of them had resorted to not informing their family and friends when they contracted the disease for fear of the consequences of doing so. “While sharing these stories online, the survivors also faced cyberbullying as they were accused of receiving funds from the government to lie about contracting the disease. When people who have COVID-19 symptoms do not seek care, they put themselves at risk of falling severely ill and put others at risk of contracting the disease.”

 

Addressing Covid-19 misinformation

The World Health Organization (WHO) says advancement in technology and advent of social media has helped to amplify the Covid-19 infodemic which has continued to weaken global response to the virus. WHO defines infodemic as “an overabundance of information, both online and offline. It includes deliberate attempts to disseminate wrong information to undermine the public health response and advance alternative agendas of groups or individuals.”

WHO believes both misinformation and disinformation contribute to increased stigmatization of Covid-19 survivors.

Victoria Bamas, team lead at the FactCheckHub, an initiative of the International Centre for Investigative Reporting (ICIR), decried the absence of a unified and effective system for disseminating Covid-19 information in Nigeria, hence the prevalence of conflicting narratives which leaves the people at the mercy of information from misleading sources.  Bamas, therefore, believes a unified, effective and consistent channel of information sharing on Covid-19 from the government and other stakeholders will be effective in addressing misinformation and disinformation on the virus.

“Misinformation thrives in the absence of accurate information. When people are not consistently informed, they would believe whatever information comes their way. To address this challenge, the government and its partners should at all times ensure they keep updating the general public about the virus. In essence, there shouldn’t be a vacuum in information sharing and there should be diversity in terms of languages being used to spread accurate information about the virus,” said Bamas.

Lekan Otufodunrin, executive director of the Media Carrier Development Network (MCDN), believes the traditional media, being the custodian of accurate information for the people, must also ensure it gets its facts right to avoid misinforming the public. “The media is the people’s major source of information and when the media misinforms, it becomes a problem. At times, journalists contribute to misinforming persons by reporting issues which have not been either clearly verified by experts or clinically proven.”

Thus, Otufodunrin believes journalists must thoroughly understand an issue to be able to effectively inform the people and dispel misinformed thoughts. “Journalists shouldn’t be in so much hurry to break the news because the implication of breaking false news is grave. Journalists must also seek people’s consent before reporting their status because refusal to seek consent before reporting could make other survivors shy away from opening up.”

ICFJ Knight Fellow Hannah Ajakaiye is currently working to build collaborations among Nigerian fact-checking organisations such as ICIR’s FactCheckHub and PTCIJ’s Dubawa as well as social media influencers like Aproko Doctor, to combat misinformation about health issues including Covid-19. Ajakaiye believes social media influencers were crucial in reaching out to people, for their capacity to influence their followers’ decisions. “Because influencers have massive followers, they, in a way shape how their supporters think.  Getting those influencers to understand basic fact checking skills and also getting them to act as agents of debunking misinformation will by far achieve results,” she said.

Governments in Nigeria must do more to mitigate the continued spread of malicious information misleading the public on Covid-19. Misleading and concocted messages about Covid-19 continue to derail governments’ efforts to fight the pandemic. If strengthened and effectively deployed, the government’s communication channels, particularly the National Orientation Agency (NOA), which has presence in the 774 Local Government Areas of Nigeria, will help significantly minimize Covid-19 misinformation.

Austin Aigbe, head of the fact-checking team at the Centre for Democracy and Development (CDD West Africa), thinks the government need to support independent fact checking to fight Covid-19 misinformation. Aigbe thinks supporting fact checking initiatives would enable the government to counter various misleading messages and help them win the confidence of the people. “Governments and donors need to support fact checking organisations such as ours, of course including media organisations because of the media’s central role in countering misinformation.”

Dr Nsofor concurs. He believes government and its partners needed to be more proactive in dealing with misinformation. “They should leverage the same platforms being used to share misinformation to dispel those wrong messages and share the right information. The government shouldn’t take a break in pushing out the right messages because those putting out the wrong messages never relent. Nature abhors vacuum, once you are not putting out the right information and others are putting out the wrong information, they will obviously have the offer hand.”

 

Leveraging community influencers to counter Covid-19 misinformation

Busari thinks the prevalence of Covid-19 misinformation also has to do with the fact that most fact checking in Nigeria is being done in the English language.  “A huge percentage of Nigeria’s population rely on local languages for information. Apart from Dubawa which started fact checking in Hausa just recently, I haven’t seen fact checking content shared in Yoruba, Igbo and other local languages. If people don’t have access to information in those languages, misinformation and misconceptions will continue to fly around,” he said.

Arogundade agrees. “Communicating information in local languages will indeed enable the people to understand better because when people listen to things in their language, they tend to assimilate and believe such information. The use of traditional communication structures such as town criers who speak the language the people will help bridge the communication gaps in the fight against Covid-19. In essence, community media such as the public address system being used in motor parks and market places should be leveraged, including community radio stations. Unfortunately, there is still no deliberate strategy to leverage community radio stations in the campaign.”

Arogundade also believes leveraging traditional and religious leaders who are better community influencers will be efficacious, considering the bond they share with the people. “When people have problems in their neighborhoods they take them up with their religious and traditional leaders because of the bond that exist between this leaders and the people. Mosques and churches should be leveraged to disseminate information about Covid-19 and counter misinformation.”

Dr Nsofor, who agrees with Arogundade, decries the fact that the government was not adequately leveraging the tremendously influential power of religious leaders in the campaign against Covid-19 misinformation. “Nigerians are deeply religious people, people listen to their religious leaders. So what we need to do is educate religious leaders on these issues so they can take the lead in the campaign. This will deepen the advocacy and for me, that will be more sustainable because the people trust the religious leaders and will therefore believe whatever they tell them.”

Akande also approves: “Our community and religious leaders need to be empowered with the right information about the disease. In Nigeria, these leaders are very influential and key in reaching people. These leaders can empower people with the knowledge and information to protect themselves, their communities and loved ones. This will greatly minimise stigmatization and reduce the spread of misinformation. When people learn that COVID-19 is real and is not a death sentence, stigma will greatly reduce.”

 

The way forward

The findings of this investigation reveal how acts of misinformation and lack of access to correct information on coronavirus is fuelling the stigmatization and dehumanization of those who survived the dangerous disease in Nigeria. It brings to light the salient yet excruciating struggles of Nigerian citizens who have survived the debilitating disease, and yet continue to live with stigma in their homes, communities and workplaces. Indeed, ending the stigmatization of Covid-19 survivors require a collective action involving governments at all levels, religious and traditional institutions, as well as practitioners in the entertainment industry, the mainstream media and social media.

The media’s all-important role is that of providing access to information that informs, educates, and debunks misinformation about the Covid-19 pandemic. However, the media cannot do it alone, it requires the support of the government, religious and traditional institutions. Worthy of note is social media’s unrivalled status as the ultimate spreader of all sorts of misinformation, conspiracy theories and disinformation on Covid-19, hence the need for concerted efforts by all stakeholders to check its abuse by agents of misinformation and disinformation which is seriously jeopardizing the fight against the pandemic in Nigeria.

Of strategic importance is the need to leverage traditional communication structures and community influencers, such as religious and traditional leaders and town criers who are not only trusted by the people but also have the capacity to communicate in their language to bridge the communication gap in the campaign against the rampaging virus in Nigeria. In essence, community radios and community media should be leveraged, including community radio stations.

 

This report was facilitated by the Wole Soyinka Centre for Investigative Journalism (WSCIJ) under its Free to Share Story Project

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