Advocates address deep distrust of mental health care among African-Americans

Call it The Sugar Defense.

When Joyce Coleman brings up her family’s history of mental illness, her elderly mother likes to change the subject.

“If I try to talk to my mother about it, she’s always like, ‘shhh,’” Coleman said with a laugh. “She doesn’t want to talk about that. As quickly as possible, she’ll switch the topic and say something like, ‘You know what? I just baked some brownies. Would you like to try a couple?’ She’ll do anything to move on to the next conversation.”

Though her mother’s evasive tactics make Coleman chuckle, she understands more than anyone that avoiding conversations about mental health isn’t funny. A committed mental health awareness activist and a HealthPartners care coordinator for people and families receiving treatment for mental illness, Coleman is committed to encouraging more conversations and less silence around mental health.

As a black woman, Coleman knows that while her mother’s approach isn’t all that unusual, it can actually cause more harm than good: Because African-Americans are less likely than other ethnic groups to seek treatment, she says that they suffer at higher rates from the negative effects of mental illness.

During their childhood in rural Mississippi, Coleman and her seven siblings watched as members of her extended family struggled to cope with untreated mental illness and chemical addiction. Though many would have benefited from treatment, it wasn’t an option they’d ever consider, she said. Mental health care was for other people. Coleman’s family kept their problems to themselves.

When Coleman left home at age 18 to live with her aunt in Minnesota, she began to understand that mental health didn’t have to be a taboo subject. As she worked toward a degree in psychology and family education at the University of Minnesota, she saw that the lives of many of her family members could have been improved if they had felt more comfortable asking for help.

Coleman’s family isn’t alone it its avoidance approach. According to the American Psychiatric Association, only one in three African-Americans who need mental health care receives it. The historic mistreatment of African-Americans by social workers, psychiatrists and physicians has established an understandable wariness around mental health professionals. Even today, African-Americans are more often diagnosed with serious mental illnesses like schizophrenia and bipolar disorder than whites and less likely to be diagnosed with more easily treatable mood disorders.

“There is a mistrust” of the mental health system, Coleman said. “It makes sense and I understand that.” But suspicion to the point of complete avoidance only hurts the very people who need help the most. Because of that fact, Coleman is committed to helping people in the African-American community understand that seeking help for mental illness doesn’t have to be shameful — and that it can result in receiving the needed help. And she’s willing to put her story out there to do that.

Outspoken

Part of Coleman’s job at HealthPartners is to call members who have completed inpatient treatment for mental illness and find out if they are following their physician’s instructions for medication and therapy.

Many of the members Coleman speaks with are African-American. This assignment is purposeful; many people of color tend to feel more comfortable working with care providers from similar ethnic backgrounds, and Coleman’s role as a supporter, a cheerleader, a nudge seems to be more impactful when members respect her and believe that she has their best interest at heart.

This is a role Coleman relishes. She wants members of her community to feel comfortable that they are getting the best possible care. When they hear her voice — calm, knowledgeable, ever-so-slightly southern — she often gets a positive response. People feel like they can trust her.

“They hear me over the phone and they automatically know that I’m a woman of color and an elder in the community.” This realization, Coleman adds, gives her a certain standing.

“There are things that I can say to them that no one else can say,” she said. “I can get a little bossy, explain issues clearly, talk about things like responsibility and self-care.” She’s also trustworthy, and for this she’s grateful. “I’m really thankful that I get to work with my own community so that I can truly address those issues. ”

Another part of being bossy is actively encouraging members to take steps to improve their mental health. Coleman isn’t afraid to do that.

“When it’s needed, I can kick people in the butt to encourage them to do what’s best for their health,” she said. “Usually they end up appreciating it. Sometimes I have to rely on love. I am genuinely concerned about what’s going on with my members and how they can get help.”

Sometimes taking care of a member means that Coleman shares her own personal history. Not so long ago, she was working with a man did not want to take a drug that had been prescribed to treat his depression.

“He said to me,” she recalled, “‘They got you trying to get me to take this dangerous drug. You don’t know what it feels like. I bet you never took an antidepressant.’”

Coleman saw this as an opportunity to make a difference in this man’s life.

“I said, ‘I have taken an antidepressant. And I think I’m OK,’” She said. “It broke through that barrier that was stopping him from taking care of himself.” Coleman doesn’t share her personal history with every member, only when she feels it is called for.

“I use disclosure for a purpose,” she said. “I want you to be better, to live the best life you can, and when I think I can use my story to do that, I will.”

A few years ago, this willingness to share her personal history to help others inspired Coleman to volunteer for HealthPartners “Make It OK” mental health awareness campaign.

“As soon as I found out about it, I thought, ‘This is something I want to be part of,’” she said. “I want to encourage people not feel that stigma, the fear, the shame. I want them to take care of their mental health like they take care of their other medical issues.”

Coleman trained to speak about mental health issues and has taken her show on the road, talking to a range of community groups, including Baraza: A Black Women’s Health Gathering, the Jordan Week of Kindness and UJAMAA Place.

Her approach at these talks is open, honest and urgent. She believes that the cultural silence around mental health issues is harmful, and she hopes that by using her own example she will be able to get more people to open up and shed the shame.

“I say, ‘If you had a heart attack, would you say, “I’m not going to the hospital until my heart feels better?’ No. You’d take care of your heart attack because you need to fix it. If you have diabetes, you’d take your medicine because you know it will make you feel better. Taking care of your mental health is the same thing.”

Getting people in the community to make that shift is important, Coleman believes, because too many people are suffering from lack of treatment.

“If we could get to that place of openness, mental health and all the issues that are connected to it wouldn’t be as severe as it is now,” she said. “There are so many people living in silence, hurting, not getting the help they need, and their families are suffering.”

‘I am on their side’

Though Coleman’s efforts should be applauded, it’s understandable if she sometimes feels like she’s waging an uphill battle, said Willie Garrett MS, LP, CEAP, Ed.D, a psychologist in private practice and president of the Minnesota Association of Black Psychologists.

Memories of historic abuse of trust in psychiatric relationships combined with modern rates of misdiagnosis and overmedication mean that many African-Americans have good reason to be suspicious of mental health care, Garrett said: “In the past, the mental health system pathologized African-Americans in terms of their culture and relationships.”

Research studies have shown that even today, black patients seeking treatment for mental illness are often given more severe diagnoses than their white counterparts, Garrett said. And medical professionals have been accused — often accurately — of using psychiatric medications in an attempt to control behaviors that they deem threatening or difficult.

“African-Americans have had historically been prescribed very strong medications for common psychiatric conditions,” he said. “And African-American children frequently are prescribed attention deficit disorder meds even when they are actually showing appropriate behavior.”

“On a whim, I took a psychology course because I needed more credits,” he recalled. “Once I took that first class, I never looked back at engineering.”

Garrett, who grew up, by his own account, “in a violent neighborhood in the inner city of Philadelphia,” left the city for college not long after his father was killed as a bystander in a holdup when Garrett was 18. He wanted to build a high-paying career — hence the engineering degree — but he soon found that he was much more interested in helping others take care of their mental health.

In Minnesota, and around the country, the number of African-American mental health workers is low, Garrett said; the number of black licensed psychologists is even lower. As one of the few African-American psychologists in the state with experience working with children, he is in high demand by families seeking therapists of color.

When people talk about black Americans’ avoidance of mental health care, Garrett, who also serves as chair of the rural division of the Minnesota Psychological Association, likes to make the point that African-Americans do care about their mental health; they just seek help through nontraditional channels.

“They seek out mental health care within their community and within informal networks. They’ll first talk to family, then often the pastor of a church.”

Taking a cautious, indirect approach makes sense, Garrett said.

“Going back to slavery where there even was a diagnosis for slaves that had the uncontrollable urge to run away from slavery,” Garrett said. “It was called drapetomania and was first diagnosed by a white psychologist.”

Breaking through that suspicion is hard, Garrett said. As a member of the mainstream medical establishment, he has to prove that his heart is in the right place. “I have to work to gain their trust,” he said. “If they’ve had a bad experience with mental health care in the past, I have to work at engaging them and helping them to understand that I am on their side.”

Patient advocate

Though many of Garrett’s patient referrals come from traditional sources, others come through a more circuitous route.

“I know African-American nurses who get people who talk to them about mental health care,” Garrett said. “I’ve had African-American insurance agents refer their clients to me.”

Other referral sources are also indirect, he added: “A lot of the hair-care people, the barbers, the beauty-salon people, talk to their clients. It’s not like African-Americans don’t want mental health care, it’s just that they are very cautious about going outside of their community as the first step in getting care.”

“We have a segment within the community that is living with a lot of undiagnosed things,” Reed said. “They avoid interactions with mental health professionals out of fear of being overdiagnosed or labeled.”

Cynthia Fashaw, director of children’s programs and multicultural outreach for NAMI-Minnesota, added that the distrust runs deep.

“Most African-American people don’t trust mental health providers — or doctors, for that matter,” she said.

But once the care relationship is established, people are open and eager to get help. “I found that once people feel like they can trust you and you give them permission to ask questions the feel comfortable asking questions, they ask very deep, thoughtful questions about mental health.”

Many African-Americans prefer to work with black therapists, Reed said. “They are less likely to talk to someone who is not of their cultural background. Just getting someone in the door is always the biggest problem. It would be so helpful if there were more African-American or other providers of color, and also more culturally competent providers who know more about the local community.”

“When you are an African-American mental health professional caring for African-American patients, you have to be an advocate,” he said. “That means writing letters, making phone calls, talking to people at the schools and helping them to work out problems that they are facing in their life.”

Garrett said that when he works with an African-American patient, he tries to approach treatment with an “informal style. You can’t always talk about ‘mental illness’ right away,” he said. “You laugh a bit at first before you move into the serious stuff. It’s the same with a rural white person. You start out laughing and joking, then you say, ‘How can I help you? What brings you to see me?’ You don’t pathologize the situation.”

As the mother of two children with mental illness, Fashaw has experienced her own share of uncomfortable interactions with health care providers.

“A lot of black people feel judged all the time,” Fashaw said. That judgment makes them less likely to seek help outside of the community for mental health issues: “I went to a provider to talk about my daughter. She lives with autism and anxiety and depression. The nurse asked me, ‘Do you work? Do you have a job?’ and ‘‘Is the father involved?’” She scoffed. “They thought they were doing a good job, but they used all of this loaded, coded language.”

A different reception

Truth-telling discussions like these are important, Coleman said. This fall, she was asked to speak about Make It OK at the National Baptist Convention in Minneapolis. She wasn’t sure how members of this largely African-American audience would receive her message. Many members were older, from more conservative backgrounds, and the distrust could run deep.

After Coleman’s talk, a convention attendee, an older woman from Alabama, approached. “She said,” Coleman recalled, “‘I need to take this to my pastor. I want you to send me more information.’ At first it was shocking. Here’s this black lady in her 70s, and she wants to hear more.” Excitedly, Coleman pulled a pile of information and sent her on her way.

The moment seemed to exemplify a shift she’s been working toward for years.

“Things are changing,” Coleman said. “People are opening up, starting to talk. I hope that folks like me have something to do with that.”