At first, Heydie Orr wasn’t sure what to make of her children’s flu-like symptoms. All three are 10 years old and under and had been at school and everywhere else active families go. It was March and even though the coronavirus was in the news, it just seemed like the kids had mild colds.
It wasn’t until a few days later, when Heydie, who is African American, became sick, that she realized something was wrong. Really wrong.
“My kids were sick first,” said Orr, a University of Wisconsin-Madison graduate who now lives in Detroit. “We thought it was just the common cold. We didn’t pay attention to it until I got sick. I was like, something is strange here. When the test came back positive for COVID-19, that’s when I called my kids’ doctor.”
Because testing was limited at the time, her family pediatrician recommended they simply acknowledge that since Orr was positive, her kids were most likely infected as well.
Each member of the Orr household had different symptoms. For her oldest child, 10, it was mostly chills and a fever. For the other two, 7 and 9, it was runny noses and coughs. Her husband, Jonathan, had a different symptom every day.
“He had headaches some days, a fever one day, but his manifested differently because it wasn’t all at once,” Orr said. “So everyone’s experiencing it differently.”
For Orr, things got really bad on March 28. Around 3 a.m., she began having severe difficulty breathing. She couldn’t lay down flat on her back because her lungs wouldn’t inflate in that position. Every breath hurt.
The hospital was only taking patients whose breathing difficulties were so severe, they couldn’t speak. She was told to stay home.
“That’s when I really called on my family to pray for me,” Orr said. “It was scary and debilitating. I cried a lot because I felt like every breath was a risk. Anxiety and fear were there for me because I was thinking, ‘What if I don’t make it?’”
Orr suffered alone in her darkened bedroom to shield her children from the fear that would come from knowing what their mother was going through.
“We did not even tell my kids that I had COVID-19 or that they had COVID-19,” Orr said. “We didn’t want to frighten them. They knew from the news how deadly it was. I didn’t want to cry in front of them because I didn’t want to scare them. Crying hurt my breathing even more.”
The worst of her breathing issues lasted about 12 hours, Orr said, then the prayers of her family and the strength of multiple home remedies took hold, and her breathing started to return to normal.
By the next day her fever finally broke and she began to recover. But the illness was unlike anything she’d ever experienced.
According to the U.S. Census Bureau, African Americans make up 6.7% of Wisconsin’s populations, but they account for 29% of the people who have died in the state from COVID-19, higher than the national number of 21.9%. Blacks make up 21% of the COVID-19 cases statewide.
Beyond that, black patients are more likely to carry stress and fears of dealing with the health care system with them to the clinic due to lack of health insurance, average family income disparities compared to whites, employment in jobs on the frontlines in the battle against the coronavirus and housing insecurity issues that mean many in the African American community live in close proximity to others in multi-family units. All of these issues existed before the novel coronavirus began to spread.
Not as prominently discussed are the mental health challenges many black people face, both during the COVID-19 crisis and before it arrived. Those issues are tied directly to how the disease has disproportionately affected the black community.
Dr. Jasmine Zapata, a Madison pediatrician and public health doctor, said relationships between physicians and black patients have contributed to problems that have been around for generations.
“Even before the COVID-19 pandemic, we knew that in the black community there were inequities in health outcomes,” Zapata said. “Anything from cancer diagnoses, asthma, diabetes, adverse pregnancy outcomes. And so because of all those things and a distrust in general with the health care system, that plays a role in some of the baseline disparities and inequities.
“So when you put that together now that we have this COVID-19 pandemic, that just creates the perfect storm.”
“It is mentally exhausting,” Orr said of working to get well. “It takes you to a dark place mentally. It consumes you. I started doing positive self-talk. I told myself I’m strong, my lungs are strong, I’m gonna make it. I didn’t think it was productive to plan my own obituary.”
Black women and distrust of the health care system
Shedding tears in the darkness has led hundreds of women, particularly black women, to seek out Sabrina Madison.
In 2017, Madison launched the Progress Center for Black Women, an organization that helps black women start businesses, find jobs, access services and plug into a supportive community. Since the outbreak of COVID-19, Madison said nearly all of the calls for help she has received are from black women who feel overwhelmed and are seeking assistance with mental health.
“People are just saying things like, ‘I’m just hearing so much in my head right now,’” Madison said. “They’re just having a hard time with their thoughts settling. Even pre-COVID-19, I’ve had a pretty good track record with folks reaching out to me to discuss trying to get some help for their mental health challenges. But I think, overall, mental health is still a stigma in the black community.”
The women seeking out Madison are afraid of not being able to pay bills on time or falling behind on rent and mortgages. They’re worried about caring for children and elderly family members. And they’re concerned about having to go to the doctor, a process that has not traditionally been comfortable for black people. Madison said she has seen the difference between how a doctor speaks to her versus how they speak to a white friend.
“Sometimes it’s just feeling like a doctor is talking down to you,” Madison said. “I remember dealing with some health stuff and I remember thinking this damn lady isn’t really hearing me. Like she was trying to blow me off. So I reached out to one of my white girlfriends and she went with me and I swear to God it was a totally different outcome. A totally different conversation was happening … They don’t think you’re smart enough to explain everything to you that you need to know.”
Throughout history, black women have faced medical objectification. Black women have had their ovaries removed, been subjected to forced hysterectomies and been given experimental medications and procedures.
Spoken or not, the lingering effects of those experiences are passed down from generation to generation, adding to the stress and fear of going to the doctor at all. During a pandemic like COVID-19, that can have fatal consequences.
Zapata said her work and interactions with patients backs that up.
“I do a lot of study in the field of maternal child health and black women,” Zapata said. “People do have a distrust with the health care system because of actual personal or anecdotal stories of how they’ve been made to feel. That they were not heard or not as important or that their care was not the same as other women.”
Zapata pointed to ripple effects from unethical experiments conducted on black people by national public health agencies between 1938 and 1972.
“I do think that contributes (to the number of COVID-19 deaths in the black community), because if you already have a general distrust with the health care system, you might wait to go in or not go in at all,” she said.
“But what I’m concerned about is not just the distrust with the health care system, but that even when there have been black community members that have tried to go in and get tested, they have been denied access.”
Black men burdened by stress
In much the same way that Madison helps black women, Aaron Perry serves black men. His role as a resource for mental and physical wellbeing grew more solid after he opened a health screening office at JP Hair Design on Madison’s west side in 2016.
His organization, Rebalanced-Life Wellness Association, has hosted virtual support group meetings during the pandemic. The groups have included Alvin Thomas of UW-Madison’s School of Human Ecology, Logan Edwards from UW-Madison’s Department of Kinesiology, Dr. Jonas Lee from the UW School of Medicine and Public Health, and Darryl Davidson of the city of Milwaukee’s Health Department.
Thomas said the groups have attracted 20-25 participants, the majority of whom are black men. They offer men an opportunity to address their fears and feelings about COVID-19 and healthy living in general, at a time when they can’t gather in spaces where they traditionally exchange information and vent.
“A really nice space that black men have had to decompress on issues was the barber shop,” Thomas said. “You suddenly realize how much you miss the barber shop because it was the one space in a large city like Madison, for instance, where you feel you could go and just be unapologetically a human being, and not have to be a ‘black man.’
“You could just physically put down your guard and just be a person and talk, laugh, share stories. And I think that’s part of what’s disappeared, at least for now.”
Many black men are burdened by stress, said Thomas, which in turn affects their physical health and how they care for their families and others close to them.
“One of the reasons we’re doing this support group for black men is to give them the space to be able to air out these internal dialogues that they’ve been having with themselves and then be able to provide some feedback based on that internal dialogue,” he said. “How do you talk to your friends? How do you talk to your family members, your church members about trying to pull support around yourself?”
The men also feel listened to, which Thomas said is vital.
“I think the thing that is really encouraging is the people in positions of influence who are reaching out to us and saying, ‘I want to show up here and support this work and support black men,’” he said. “So, just last weekend we had Mayor Satya Rhodes-Conway show up and spend the entire hour-and-a-half with us kind of listening in and taking questions and making comments when necessary, but also being really supportive about just listening on some of the issues.”
For many black men, advisories to wear face masks in public comes with a lot of baggage, including stress over how others perceive them.
“It’s getting warm outside and people are going out to take walks, and they’re doing it with face masks on,” Thomas said. “As a black man, you have these myths and stories in the back of your head. You think to yourself, am I going to be considered a risk? If I walk through a neighborhood with a face mask on — and a face mask is what I’ve been told I should be wearing — how am I potentially heightening my threatening stature?”
Thomas brought up Ahmaud Arbery, the unarmed black man who was killed while jogging in Brunswick, Georgia, in February. Gregory and Travis McMichael were arrested and charged with murder last week after cell phone video of the shooting surfaced and two prosecutors recused themselves from the case. Gregory McMichael is a former investigator in the local district attorney’s office.
Thomas said even though the case is not related to COVID-19, such incidents play in the back of the minds of many black men trying to keep themselves healthy, be it by wearing a mask or taking a run outside.
“As a black man walking around, you feel the stares, you feel the glances, whether they are real or not,” Thomas said. “There’s a perception that people are looking at you differently. That you could, at any minute, go from being an innocent black man walking on the street to being a suspect, to being a dead person.”
Thomas said it’s not lost on him that the vast majority of faces at an April 24 rally against Gov. Tony Evers’ safer-at-home orders were white. Some protesters carried long guns and Confederate flags, which can be unsettling to black men.
“I don’t even know what the word is I’m looking for,” Thomas said. “Just like the mental feelings that black people have looking out at it feeling like I’m unwelcome or I’m disposable or something like that.”
He also pointed out that the people most exposed in a rush to reopen the economy are predominantly people of color who may not have access to full health insurance coverage.
Zapata also saw the rallies and felt disheartened, but for a different reason: The protesters have no idea, she said, what people dying of COVID-19 look like in the hospital because no one is allowed to see them. Reporters are not allowed to be in the intensive care units to cover it.
“It really, really breaks my heart,” she said of the protests. “Because I’m in communication with physicians across the nation and I’m seeing them describe in detail having to watch people die without their families holding their hand … It seems just like a big slap in the face and disrespectful for them to do that and not take this very seriously.
“I do get where they’re coming from because people are devastated by the economic implications of this,” she said. “But I would rather have a situation where we’re fighting for that individual to recover economically rather than them being in a casket and death.”
A financial tightrope
The COVID-19 pandemic has led to historically high unemployment numbers across the country. In just the week of April 26-May 2, the Wisconsin Department of Workforce Development reported that there were 49,943 initial claims for unemployment relief compared to 4,891 for the same period of time in 2019.
According to a report released last Friday by the the federal Bureau of Labor Statistics, the national unemployment rate is 14.7%, up from 4.4% in March. The African American jobless rate is higher, at 16.7%. That’s topped by the Latino jobless rate of 18.9%.
Those who still have jobs due to working in grocery stores, fast food restaurants or delivery businesses are at higher risk of exposure to the coronavirus. And many of those workers are people of color.
Ruben Anthony, president and CEO of the Urban League of Greater Madison, has been walking the slippery tightrope between helping people get work in a declining economy and weighing the risks of the jobs available.
“The whole idea of exposure is threatening and African Americans are maybe playing closer attention to that,” Anthony said. “I know nationally, African American leaders are telling African Americans don’t be so quick to go back into normal things like working and getting out into the community because African Americans are having disproportionately adverse health effects.”
The Urban League, which serves a large number of black job seekers, launched the COVID-19 Workforce Recovery Initiative April 1 and is working with 51 companies to help employ people.
But Anthony pointed out that because of the high unemployment statistics, people are feeling pressured to take jobs in risky fields. The organization is serving some who have never sought out its services before.
Alvin Thomas is worried about the cost people are willing to pay in order to find work. He talked about seeing a black teenager working in a grocery store. The boy was wearing a face mask, but still touching his face.
“It just hit me that in the midst of a crisis like this, black kids are still dispensable. Black kids are still disposable. And part of that could well be that white kids can be safe at home because their parents can afford to keep them safe at home,” Thomas said. “And for black kids, Latinx kids, this represents a space to make a little bit extra money so now you can contribute to your family. That, to me, is one of the very insidious ways that poverty and financial strain really affects black communities.”
The Foundation for Black Women’s Wellness, an organization founded by Lisa Peyton Caire, has been working during the pandemic to help black women stave off the emergency financial situations that lead to situations like the one Thomas fears.
In April, the foundation started a COVID-19 relief fund, seeded by a $20,000 grant from UW Credit Union. The money will help support black women and families facing issues with rent or eviction, utilities, medical expenses, food and other emergencies.
“We’ve got to take this as an opportunity to look closely at solutions not only to climb out of COVID-19, but to ultimately address inequities that we have not solved prior to now,” Peyton Caire said.
Thomas also has his eyes on the aftermath of the pandemic. He predicts a looming mental health crisis as people decompress and process trauma caused by the disease and efforts to contain its spread.
“I would like to see specific funding for programs that are addressing men of color, families of color, to help provide support so that when we do emerge from COVID-19, there’s some kind of structure,” Thomas said. “I think whatever we do, we need to get the message out there that black men are human beings first and whatever other labels you want to add to them, that comes after them being human beings. But human beings with feelings, with emotions, with mental health challenges, with needs and to force people to recognize that and to treat them as such.”
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