Black Americans' health is in crisis. What will it take for them to be well?

Anika Nailah's 80-year old husband died last autumn, a loss so profound it's still difficult for her to comprehend. David Louis Thomas was a Black man, a fact essential to understanding his life as well as his death.

Nailah describes her husband as wise, loving and adventurous, their marriage intimate and playful. Thomas was a vocalist and a composer who once played semi-pro basketball in Greece and continued to play pickup games well into his 60s. His life in Holyoke, Massachusetts, was active and full, and he cared for himself the way so many Black people do – by avoiding formal medical care.

"I could count on one hand the number of times he went to a doctor's office if something wasn't right with his body," Nailah said. "He cared for his body on his own, piecing together information he heard from those he trusted most."

When Thomas got sick, Nailah became his voice. She became overly friendly with white men in white coats. It's how she attempted to distinguish her husband from every other Black body, to prevent her husband from becoming just another statistic.

Thomas was diagnosed with bone cancer, but he was skeptical of the largely white medical establishment and decided to take a holistic approach instead. Even the naturopath, a white woman, was a disappointment – not because she couldn't heal him, but because it seemed she barely cared, didn't check in or follow up, didn't understand the history of harm between the medical profession and the Black community or what was required to mend it.

Nailah's story illustrates the difficulty Black people have in remaining healthy and well in a society where all too often to be Black is to be less than human, to be Black is to be disbelieved and discounted and to have one's body destroyed, slowly or all at once.

Black History Month: In the crucible of historic change, I grew up Black and proud

‘Unity without uniformity’: 50 years later, ideology of 1972 National Black Political Convention still resonates

Operation Breadbasket: How a 1966 economic boycott plan became Jesse Jackson's signature program

In every area of health – physical, psychological, financial and social – Black communities are worse off than their white counterparts in the United States. A fifth of Black Americans is considered in fair or poor health, according to the Centers for Disease Control and Prevention. Black Americans cope with persistent racism, carry intergenerational trauma, are more likely to live in poverty, experience structural inequities in health care, and in the U.S. have experienced among the highest death tolls from COVID-19.

Black Americans ages 18 to 49 are two times as likely to die from heart disease than white Americans, and Black Americans ages 35 to 64 are 50% more likely to have high blood pressure, according to the CDC. Black women are three times more likely to die from pregnancy-related causes than white women. Black women and girls experience disproportionate rates of sexual violence.

Black Americans are also less likely than white Americans to use primary care and to seek therapy. When they do seek help, they report that physicians minimize their concerns. By the time many Black people walk into a doctor's office or hospital, they are already in crisis.

"African Americans are used to tolerating a lot. We handle a lot of stress, intergenerational stress, historical stress, still, trauma from slavery, such that we don't always know when it's time to ask for help," said Dr. Paula Powe, a professor of psychiatry at the University of Pittsburgh. "A lot of times we get to health care and it's too late."

A legacy of mistrust

There's a long history of the medical system abusing and exploiting Black bodies – dead African Americans pulled from graves for scientific study, Black women sterilized without their consent, and the notorious Tuskegee Syphilis experiment.

The consequences of that abuse ripple today and are particularly striking during the pandemic. A 2020 USA TODAY investigation revealed how racist policies of the past and present are fueling high COVID-19 deaths in communities of color. But a history of mistrust between Black Americans and the medical community also means they are among the most skeptical of getting a COVID-19 vaccine.

Black Americans and medical abuse: No wonder many are wary of COVID-19 vaccines

Reconstruction: A Smithsonian Black history exhibit says it's an ongoing process

Black Americans consistently report feeling they are treated differently by health care professionals because of their race. A 2011 paper published in Clinical Orthopaedics and Related Research found “racial/ethnic minorities consistently receive less adequate treatment for acute and chronic pain than non-Hispanic whites, even after controlling for age, gender, and pain intensity.” A 2020 study found Black newborns are more likely to survive during childbirth when cared for by Black doctors.

Only 5% of active physicians are Black, according to the Association of American Medical Colleges, and only 4% of psychologists in the U.S. workforce are Black. according to the American Psychological Association.

"Mistrust erodes the ability to appropriately get basic needs met, often manifesting in delays in seeking and getting care resulting in compounding neglect, which has a significant negative impact on physical, psychological and spiritual health," said Dr. Alisha Moreland-Capuia, director of McLean Hospital's Institute for Trauma-Informed Systems Change in Massachusetts.

Moreland-Capuia said the onus is on white medical professionals to create safer conditions for Black patients to participate in care, which includes a willingness on the part of white doctors to inquire about, acknowledge and consider historical trauma and harm and a willingness to create thoughtful treatment plans that accommodate that history.

Black health inequities are structural

Black Americans are less likely to seek formal medical care and are also less likely to receive adequate treatment when they do, experts say. This is particularly dangerous for Black Americans because they are living under chronic stress, which Moreland-Capuia said humans were not designed to do long term.

"It's not surprising that you would see historically and chronically marginalized communities at more risk, and dying at higher rates," she said. "When we are having these conversations about Black health and wellness, we cannot have them independent of the very real reality that there are structural things that have to improve in parallel."

According to the American Psychological Association, chronic stress can result from factors such as poverty, family dysfunction, or traumatic early childhood experiences. It can lead to despair and hopelessness. Chronic stress in Black communities can include everything from microaggressions to police brutality to working on the front lines during the pandemic.

George Floyd video adds to trauma: 'When is the last time you saw a white person killed online?'

Sun, sand and civil rights: Uncovering Black history at the beach and beyond

"When you look at the conditions in Black communities, in particular, think about the things that would leave someone stressed – uncertainty, inability to cover bills, to meet basic needs, not being able to own a home, to have a job with a living wage," Moreland-Capuia said. "You have folks continuing to live in impoverished conditions while also dealing with a very real physical fear of being able to exist in a community, in a neighborhood, in a home, in a church, in a park."

Moreland-Capuia said Black health is directly tied to poor socioeconomic conditions, which create environments so stressful they can disrupt almost all of the body’s processes. Chronic stress increases people's risk for coronary vascular disease, obesity, diabetes, depression and autoimmune disorders.

Racism is also associated with a host of psychological consequences, including depression, anxiety, and other serious, sometimes debilitating mental conditions including post-traumatic stress disorder and substance use disorders.

The dangers of toxic stress in childhood

Experts say challenges for Black health begin early. One of the greatest predictors of poor long-term health is adverse experiences in childhood, and Powe said Black children are especially vulnerable.

Adverse childhood experiences are potentially traumatic and can include abuse and neglect, family disruptions, exposure to violence, poverty, and living with an adult with mental illness. These experiences can create toxic stress, which is severe, chronic and damaging to a child's development.

"When a child experiences early significant adversity or trauma, and there's no adult in his or her life that helps to buffer that, you see changes in their brain," Powe said.

Those brain changes have a cascading effect. Children who experience early adversity can have difficulty with executive functioning, with being able to plan and organize and control impulses. This can lead to problems in school, which has implications for future employment and economic security. Research has shown social class is among the greatest determinants of long-term health.

"Individuals who experience toxic stress over the lifespan are more likely to engage in risky health behavior. There's more disease, there's more morbidity and subsequently earlier mortality," Powe said.

Powe said Black families and parents, in particular, need increased support without judgment. Parents need tools to protect their children from toxic stress, and more resources to help their families move beyond basic survival.

The trap of Black 'resilience'

Some Black people resist the characterization they're inherently resilient or that resilient is all Black people can be while living under cultural oppression.

Nailah said she often feels she and other members of her community cannot authentically express pain, anger, or grief, especially in white spaces, where Black people feel the pressure to always be competent.

"You are always worrying about how you're going to show up, which really does not have a lot to do with how you really feel," she said.

Aishah Shahidah Simmons is a survivor of childhood sexual abuse and adult rape who says resilience can be a trap that keeps many Black Americans from seeking help. Simmons said she has felt pressure from within her community and outside of it to minimize or hide her trauma.

"I think that we can perform resiliency. Using myself as an example, I'm very public about being a survivor – I speak about it, create work around it, but I also have a lot of trauma. I also have PTSD. I'm still grappling with things," she said. "Often the impetus is to focus on Black girl magic, Black boy joy."

The problem, she said, is when Black people are not allowed to show the backside of resiliency.

"We ask people to deny their trauma," she said. "We're often asking people to act as if it doesn't exist."

A definition of healing

Moreland-Capuia says she hears people talk often about healing in the Black community, though she's skeptical most people know what that means.

"The real definition of moving toward healing is eliminating this needless preventable stress. I don't hear folks wording it in that way," she said.

Not only is healing ill-defined, but health experts worry many members of the Black community don't believe they deserve it.

"There's been such a long marination in trauma that's become normalized that we're only now really allowed to talk about it for the first time," Powe said. "If we spoke about it before, we were disregarded or we were playing the race card. ... The world is now recognizing the trauma that has been inflicted upon Black Americans and a lot of thoughtfulness needs to go into helping heal, and understanding it's going to be a process because there's a huge lack of trust."

Since her husband's death, Nailah has thought about her own health and wellness – what it means and how to maintain it. Nailah, a writer and social justice educator, has tried to focus on purpose, on the work she can do to create a more equitable world.

"We have to have some sense that there are things that we can do that can make us feel less insane, more sane, more valued," she said. "We've never held our breath waiting for white people to get it together."

Nailah said in the midst of her grief – the acute grief of losing her husband and the steady grief of living in a racist society – she has realized the one thing she cannot be healthy without.

"Hope," she said. "It's the last thing you get to take from me. You don't get to take my humanity from me and make me feel like I have no dignity and there is no hope and there is no future. That hope belongs to me. No matter what."

This article originally appeared on USA TODAY: Racism and discrimination remain dangerous for Black health, wellness