Coronavirus (Covid-19) and the activist: A Black patient’s journey through the system

Filed Under: Costs, Patients, Providers

- photo by Fred Joseph on Twitter

For Fred Joseph, it started in July with an odd stiffness in his neck. As an athletic man who works out and stretches regularly, he said, it just didn’t make sense. Within a few weeks, the stiffness got worse, and he went on to experience migraines so severe they would wake him up, and extreme fatigue.

Joseph, 31, from New York City,  said the next big thing was “brain fog,” which Covid patients describe as a collection of symptoms including muddy thinking, a sense of confusion, and misplacing words or facts. He said, “I also get that with my [multiple sclerosis], but this felt a little bit different because it took away from my focus.”

Although he continued to feel worse and worse, he said he did not connect this with Covid. The symptoms most people had been expecting were respiratory ones, he said, and he had none of that. But he did say that the brain fog began to seriously affect his work.

Eventually after weeks of medical encounters, he would Tweet: “I Just Found Out I Had COVID-19 and We Don’t Know Much About This Virus: Many who have had the virus have suffered from similar symptoms. I was asymptomatic and didn’t begin to experience anything until weeks or months later. I hope this story encourages people to be safer.”

Joseph, a member of the Forbes Under 30 list for marketing and advertising, is the founder of We Have Stories, a 501(c)(3)  marketing agency focused on supporting marginalized creators and businesses. He was also the founder of the biggest GoFundMe campaign ever, the Black Panther Challenge, which raised more than $950,000, to allow more than 75,000 children worldwide to see “Black Panther” free. He launched a Rent Relief fundraiser to help people during the pandemic.

He writes frequently about marketing, culture, and politics, and has a book coming out called “The Black Friend: On Being a Better White Person.” Race is a topic he has delved into.

Joseph’s story has many themes. The lack of medical information on Covid affected his journey immensely. He is a Black man in America, where the medical system has many racial disparities in treatment. He  lives in New York, which was the epicenter of the pandemic beginning in March — and a city where Black and brown people took sick and died proportionally much more frequently than white people. Joseph also has had copious experience with the American health care system, and has fought to navigate it as he has built his business and influence in marketing, social media, philanthropy and activism.

A visit to the hospital

On Aug. 7, about a month after his first symptoms appeared, Joseph went to the hospital. He did so, he said, because his fiancée’s mother said, “You know that sounds like meningitis, right?” After Googling the symptoms, he agreed, and headed off to the hospital. They did a spinal tap, Covid testing, other blood work and so forth. Ultimately, he said, the doctors told him they didn’t know what was wrong with him — even sending his results to a Centers for Disease Control and Prevention specialist who had no answers. So he said, “O.K., well what do I do? They said, ‘We’re going to put you on doxycycline. It’s not just a meningitis medicine, it’s an antibiotic for other things as well.”

The antibiotic bothered his stomach, he said, adding that he treats his MS not with medications but with a more holistic regimen. After taking doxycycline for a while, he went back for more tests, and doctors told him “we don’t know why you’re on doxycycline, so let’s just stop.”

At this point, he said, his fiancée told him she had just read an article about people who can’t prove that they have Covid because the tests are negative. “So I’m like O.K., let’s do the antibody test,” he said. “We did, and they told me I have the antibodies. I said, ‘That’s impossible. I never had Covid.’ Well, they said, it looks like you had Covid — you just may not have had symptoms. But now, it seems like you’re suffering from post-Covid syndrome.”

His fiancée’s mother, too, tested positive for antibodies, although she, too, never felt that she had Covid.

Knowledge is scarce

Medical knowledge of the long-term consequences of Covid infection is in its infancy, and the definition of post-Covid syndrome is still in flux. There is not a great deal of rigorous study yet, and the illness takes many, disparate forms. It is not clear how  many people get the virus and are asymptomatic, or how many have long-term symptoms — though thousands and thousands of people have joined online support groups to document and compare their long-term ills.

On Aug. 28, just after he got his results, Joseph tweeted his news about learning he had been infected at some point in the past and was experiencing post-Covid symptoms. “I hope this story encourages people to be safer…” he wrote.

He then tweeted a thread of his experiences, winding up: “People have been reckless and entitled about this virus. I’ve been taking safety precautions since February, and still got it. Being a person who has other health ailments, I’m lucky to be alive. Everyone needs to be taking this serious. We don’t know what we are dealing with.”

He said his experience motivated him to use his platform — he has 93,000 followers on Twitter and 55,000 on Instagram — to  send two messages: “Hey, everyone, one it’s not over, obviously. And two, we don’t really know enough, our testing is not good enough to know whatever it is we think we know.”

What treatments and medical resources has he been using?

“To be honest, I’ve just been sleeping,” he said in early September. “My neck is less stiff now, and I haven’t been having the headaches. I mostly just feel tired. I want to sleep.”

‘I’m just Black in America’

Initially, he said, the extreme fatigue had led him to wonder if he was actually physically ill.

“There was a moment in which I got the test back saying I was negative when I thought maybe I was suffering from depression because of everything that’s going on,” he said.

“I mean, you know, outside of the pandemic, I’m just Black in America. So I just figured, O.K., I’m depressed.  But I’ve been depressed before and it doesn’t really feel like that. I said to my best friend recently, I oftentimes think that if I was getting really sick with something, that I would be able to fight — God forbid, I got cancer or whatever. But the way I’ve been tired, it feels like everything’s coming to an end.”

Joseph said, too, that he feels fortunate to have the position he does, and to have great visibility on Twitter and elsewhere.

“That has given me the ability to have community,” he said. “The second that I posted about this, people were like, ‘Oh my God. Yeah, me too.’ But if you’re by yourself suffering from this, how do you explain it? Like, ‘Hey, I’m really tired and I can’t focus. Well, O.K., maybe just get a couple days rest.’”

Joseph also pointed out it was not the doctors who suggested he get the antibody test to see if he’d been exposed to the virus, but his fiancée’s mother.

“There was no doctor of all the doctors I saw, in Bronxville, or in White Plains, who said, ‘Let’s see if you’ve had this before.’ No one.”

Dozens of long-term Covid patients have told us that their doctors were not aware that Covid patients could experience symptoms for months and in disparate ways.

His forthcoming book: ‘The Black Friend: On Being a Better White Person’

In general, Joseph said, the medical profession does poorly by Black and brown people.

“All of us are kind of like, let’s do our own research because the medical field generally  is disproportionately ineffective when it comes to Black people,” he said.  “I’ve experienced that constantly. I mean, even with my MS experience — early on, the doctors said, ‘Oh, you’ll be fine. It’s probably from throwing the football around and taking a few hits and taking a few licks.’”

Distrust or mistrust of medicine, he said, contributed to his decision to treat his MS more in a holistic way than in a strictly medical regimen.

“I do think that I have a deep distrust of medicine,” said Joseph, who said he is about 6 feet, 3 inches tall and weighs 240 pounds. “We build this narrative about Black people: The men are big and strong and the women are able to suffer and struggle through and make it. Which doesn’t really give way to like, ‘Hey, we need help, can you help out? You know, can you actually do what you’re supposed to do?’”

Joseph is not alone. Multiple studies suggest that Black Americans are generally less likely than white Americans to trust physicians. And that’s not without cause. A broad analysis found recently that an algorithm that is widely used in American hospitals to give health care to patients has systematically discriminated against Black people. The algorithm was developed by Optum, a subsidiary of the health giant UnitedHealthcare.

“So for me in terms of my MS, I have been on a whole bunch of different things over the years.  I’ve had a MS, or known about, it since I was 24. I’m 31. But now — I have taken things and felt sick and felt like doctors are like, ‘Oh, you’ll be fine.’ I said, for lack of better term, ‘Fuck this. I’m done with it.’”

Picking a hospital in Westchester, not in Astoria

Joseph, who lives in an affluent section of Long Island City, Queens, went to the hospital in the suburb of Bronxville, in southern Westchester County, rather than going to a New York City hospital. He said that’s his common practice, to go to the suburbs.

“This is actually very much a look into the psyche,” he said. “The closest hospital to me is in Astoria. But if I went to the hospital there, I would get the same care as other people in Astoria, or in Queensbridge, and so forth.

“I have tattoos, I’m big, and I’m  Black, and people would assume that I just come from wherever, and I’d be mistreated. I’ve seen it before, having gone to medical facilities in New York City. So typically what I do is go to Westchester, because there’s an assumption for Black people in Westchester, especially certain parts of Westchester, this person must be someone in order to be here.”

That’s a theme of his book, he said, which he described as “an attempt to help build empathy and understanding” about racism. “Most racism happens in such nuanced ways,” he said. “No one who’s white would ever think that hey, a Black person might have to travel out of their general vicinity to get good health care. But those are the types of things that I’m talking about.

“I’m pretty sure white people don’t consider the fact that sometimes Black kids could be the best student in class — which I was oftentimes, but I reduced myself because of the way my teacher treated me. She didn’t like me being Black and being the best student in class. So I let some white kids get a few better grades than me, just so I wouldn’t have to deal with the racism of being better than white kids. Things of that nature. So the book is about that.”

The racism of the moment

Beyond the effects of racism on his  medical treatment, Joseph said he had been thinking a lot about “racism in America, but also actually the specific racism of the moment.”

“There’s a ton of disinformation being spread by the executive office, by the Trump Administration. That has had a deep impact on Black and brown communities in particular. Obviously, there’s systemic racism, but then there’s also this very moment with Donald Trump and his administration in office, where we’re seeing them push things like hydroxychloroquine, and things of that nature — especially for people who are extremely susceptible and being fed this information through various platforms, Facebook, etc.”

The story of the pandemic also changed in racial terms, he said. In his relatively affluent Long Island City neighborhood, he said the police were handing out masks under quarantine. Driving into the grittier Queensbridge or parts of Harlem, though, he said, “Damn, they’re beating people up for not having masks.”

As an MBA, he focuses on numbers, and how they sketched the arc of Covid. “When the numbers became Black and brown, the story was different, right? It became a storyline  like ‘Black people are to blame because they’re not doing what they need to be doing.’ And then also, the focus on research and resources for it became different too.”

Returning to the topic of racism in healthcare, Joseph explained: “I have to legitimately consider where I’m getting my health care. Even though you have some of the finest hospitals in the country in New York City, I, as a Black person, don’t experience the best parts of them — often I experience the worst.

“Years ago I went to the hospital with sciatica. They left me on a gurney in this random part of the hospital and forgot about me for three hours.”

It was experiences like this that sent Joseph to a southern Westchester hospital miles away from his home. ”You’d be surprised how proximity to whiteness makes a difference,” he said. His younger brother was ill with a lung ailment not long ago, he said, and he went to get medical treatment in Valhalla, also in Westchester. “My whole family was treated as if, ‘Oh my God, he must play a sport’ or ‘Oh my God, they must be on television.’ That’s how your proximity to whiteness and the wealth class of Westchester works — you’re treated better because somebody makes assumptions about you.”

“It’s not just medicine, it’s everything — every single thing that a Black person does is considered in a different way based on the seeming proximity to whiteness or to wealth.”