COVID-19 Survivor Now Fights Misinformation in Her Community

Gail’s story was written for COVID-19 Survivor Diaries — a project led by humanitarian photographer and videographer Morgana Wingard, highlighting stories of those who survived COVID-19 from across the country.

ATLANTA — I was waiting for a lockdown that never came, which was crazy to me. I was kind of playing chicken with the virus and still going out because we could. We were one of the last places to get a stay-at-home order. I think I got it at my gym. I probably went one or two more times than I should have.

I have a very vivid memory of the beginning of the illness. I was coming out of a Kroger, I got in the car and I had the worst headache of my entire life. It felt like a sinus headache and a migraine combined. Then I had this huge sneeze. I didn’t think anything of it. That was the beginning.

I never had a cough so I wasn’t checking for the virus, but I grew increasingly lethargic, and my breathing was affected to some degree. I’d walk the dog and I’d be tired by the time I got back. That’s when I started to get a little worried. When I noticed the loss of taste and smell, I started to get concerned as those symptoms were coming on the radar.

It got progressively worse: My shortness of breath, my elevated heart rate. Then, I started noticing that my cognitive processes were not the same. My speech patterns were changing, and they got interrupted. I had difficulty forming words. Neurological issues were the worst part of it.

I got scared when I started doing things like someone would do while having a stroke. I was combining phrases. For instance, I was in the backyard and I would tell my dog, “Let’s go upside.” As I usually go upstairs to go inside. To say this, I would combine both words. It was like the wires in my brain were crossing. All of these things that I was experiencing were not being communicated as symptoms.

One day, when I started to get better, I laid down for the night; within seconds, I couldn’t breathe. My chest tightened and my heart started racing. I was gasping, trying to get air. I couldn’t get air and it scared the living daylights out of me. I got out of bed. I still couldn’t breathe. I probably should have called an ambulance at that point. I don’t know why I didn’t. I’m a yogi, so I started doing pranayama breathing. I don’t know if that is the reason that it went away. That incident really shook me. I get a little emotional about it, as it was the first time that I’ve ever wondered if I was going to make it.

In Georgia, we had a scarcity of tests when I was sick. They had 20 test kits in the county. I couldn’t get tested for a long time. When I went to get tested, both of the doctors said to me, “It’s clear, you know more about this than I do.” That has to be one of the most unsettling things to hear when you are suffering from an illness.

The recovery was slow after that. And when I say “recovery,” I mean I was not tired after making a cup of tea. The fatigue was real. But when I started to recover from that, the neurological symptoms started and the irritability was unreal. My nervous system is not the same. I’m more easily agitated and more emotional. I can’t discuss charged topics as I can’t manage my emotions the same way either. People would say things and I would have this inordinate response, a completely inappropriate level of agitation. I would watch myself flip on people and not be able to stop it. I’m like, “Why am I acting like this?” You can look perfectly fine and function well, depending on the time of day. In the morning, I’m super sharp, but then I can’t have real in-depth conversations after nine o’clock. When you get tired — really, really tired — you might get overly emotional or agitated more quickly.

I feel that I am better, but I don’t know if this is as good as it gets.

Fighting COVID with Facts

I kept researching and kept trying to figure out what I could do to get people to understand how real this is, to get the information that I had out. That’s where I got into, “I need to get a campaign going and kind of get the facts out there.” So, I started building it. I joined the survivor groups on Facebook. That’s what got me interested in the data and the research because I was compelled by how forthcoming people were.

So, I started building on this idea of more than a campaign. Even if I were to start the communications, it’s not as meaningful as it should be unless I have the research to support it, like addressing risk behaviors, mitigation behaviors, personal motivations and what we should be saying.

Before I got into the public health aspect of social equity, I was trying to address social equity issues through conversations as a qualitative researcher. Unmediated conversations are where the real diamonds are. I saw an opportunity based on what I’d seen in the Facebook groups and what I know about conversation. We can look at the real barriers to these mitigation behaviors. So, we’ve been monitoring the conversations of about 17,000 Twitter users in Fulton County. We also developed an algorithm that allows us to look at race. That shows how big the data gap is from a race standpoint. We surveyed Fulton County residents to get a sense of the knowledge, attitudes and behaviors related to COVID-19. The findings were frightening.

‘The Findings Were Frightening’

One of the issues compounding the pandemic is the infodemic. That was painfully obvious in terms of the conspiracy theories, particularly amongst communities of color. Forty-four percent of African-Americans believe this is a political conspiracy and 25% believe Bill Gates has something to do with it. 5G is another issue. Between 30 to 40% don’t trust the government to administer tests. And that’s who’s funding most of the testing. This is before you even get a vaccine. The issues with misinformation, disinformation and trust were plain and simple. Black folks ideologically are buying into the same conspiracy theories that the alt-right is buying into, literally the same posts. They’re sharing the same posts.

Fatalism also plays a role. The number of people who believe that this is God’s will or that we’re being punished for one thing or another was striking. Or, who do not think they need to take precautions because they think, “If God wants me to have COVID, then I should have COVID” or “If God doesn’t want me to have COVID, then I won’t.” We’ve got to figure out a way to reconcile science and religion. We have to start pairing faith leaders with scientists, epidemiologists and doctors.

Forty percent of the respondents believe that keeping your immune system healthy, taking supplements or herbal tonics is going to protect them from COVID-19. Thirty percent were relying on these herbal tonics to protect them from COVID-19.

You’ve still got 30% of people hugging people outside of their household or kissing people outside their household even though they know better.

We asked open-ended questions like, “What should we be telling people? How should we be communicating? What’s going to make them do the right thing?” Survivor stories were coming up. You need to get up close and personal with people who have had COVID. You need to get people to understand what it’s like and get them to understand that it happens to the best of us.

Another thing that came back was the task of normalizing mask-wearing the same way that we had to normalize seatbelts and the same way we had to normalize condoms for the HIV epidemic.

Considering Social Determinants

I wanted to address the victim-blaming: the burden that people put on people’s right to not catch this disease. They might have to take mass transit every day or they encounter hundreds of people in retail a day. We’re not taking that into consideration. Educating people on the risks is important to me.

I want to help people understand the social determinants of health and why people are predisposed. For example, being Black is a precondition. When you account for income, education, economics, like all of those other social determinants, we’re still suffering at greater rates. One of the reasons is the physical precondition. As far as preconditions go in chronic illnesses, we over-index and pretty much always have in terms of obesity, heart disease, hypertension, kidney disease and even lupus. We’re immunocompromised. The intergenerational trauma that people, communities of color who have had to endure extremely difficult conditions across generations of time, that’s a precondition. Smoking is a precondition. We don’t talk about that enough.

And that’s before you even get to the structural determinants. We tend to live in multigenerational households, particularly Hispanics, so social distancing is a lot harder. We rely on mass transit a lot more. We’re exposed to a lot more people. We over-index as essential workers. We are on the front lines of retail or sanitation or construction and the lower-paid jobs in health care. We over-index, particularly women of color, and then as women, we tend to be primary caregivers as well. They don’t have the same luxury to work from home or take time off or get someone to do certain things for them or order their deliveries versus their groceries versus going to get them. The impact economically is a real issue. There’s a lot to unpack.

When it comes to COVID-19 information, our awareness is lower because we aren’t engaged in the same channels. We get our news from a lot of different places that don’t consist of CNN or MSNBC or what have you. Social media plays a big role. Time is really short, so do I watch the news or do I get on Facebook? African Americans or communities of color tend to dial into local news a lot more. Unfortunately, they are very concentrated in areas where there was a lot of pandemic denial. If you’re just watching your local affiliate versus maybe a CNN or MSNBC, you’re not getting the same information at all.

The last piece is the trust issue. It’s a function both of history and of disinformation. There are bad actors who have been targeting people of color. They’re also targeting them from an anti-VAX standpoint, playing off of this legacy of mistrust and communities of color with the medical system. The Tuskegee experiment was not that long ago for us. There’s Henrietta Lacks. The experimentation on the Black bodies, something that’s passed down from generation to generation, is a trust issue.

A Woman on a Mission

I’ve been on this mission to debunk things and get people of color in positions of knowledge and power. I’d like to create a hub for advocates, allies, organizations and partners like a LinkedIn for public health meets Community Commons. I would like to centralize that information at the local level, create a place where there are key indicators that are measured on an ongoing basis, and make that data accessible so that people can access it quickly and on an ongoing basis and can be paired to address the need based on their interest.

I’m naturally a curious person. I feel like I’m going to have something to do for the next five years.

About the Author:
Gail, 47, is a health equity consultant living at the intersection of culture, communication and community. Her advocacy project, Alive and in Color, is a community outreach initiative that aims to connect at-risk communities of color with information, care and resources needed to mitigate the impact of the pandemic.

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