Out of the Shadows, Part 6 | Stopping the stigma: Mental health is physical health, but many still face shame, marginalization after diagnosis
Mental health stigma endures despite hundreds of years of progress in the science, treatment and understanding around mental illness.
While we no longer drill holes in the skull to release evil spirits, and there has not been a mass sterilization and genocide of mentally ill people since Nazi Germany, stigma remains deep and widespread on personal, societal and institutional levels.
While mentally ill people today are not locked up en masse in asylums, a vast number end up in prison or homeless.
And the impact of the stigma itself is devastating.
“Many people with mental illness experience shame, ostracism and marginalization due to their diagnosis and often describe the consequences of mental health stigma as worse than those of the condition itself,” according to a 2016 editorial published in The Lancet and titled “The health crisis of mental health stigma.”
Stigma, according to the U.S. Department of Health and Human Services, is “the most formidable obstacle to future progress in the area of mental illness and health.”
And the number of people impacted by mental health is significant.
Everyone has mental — or behavioral — health, just like they have physical health. And everyone is vulnerable to mental illness, just as everyone is vulnerable to physical illness.
It is estimated 1 in 4 people in the U.S. have some kind of mental health condition. About 50% of the population experience an episode of mental illness during their lifetime that would benefit from treatment.
More than half of the people with a mental illness don’t receive help for their condition, according to the American Psychiatric Association.
“The stigma attached to mental illness is ubiquitous,” according to a National Institutes of Health report titled, “The stigma of mental disorders: A millennia‐long history of social exclusion and prejudices.”
“There is no country, society or culture where people with mental illness have the same societal value as people without a mental illness,” the report concludes.
Research shows stigma to be one of the leading risk factors for poor mental health outcomes.
There is a vicious cycle — the effect of stigma on a person can prevent them from getting treatment, housing and employment. It can wreck relationships. Thus, the stigma can make the actual mental illness — and the ensuing negative impacts of the mental illness — much worse.
It also has physical effects, according to The Lancet editorial.
“Mental health stigma is not only an interpersonal issue: It is a health crisis. Individuals with serious mental illness die decades earlier than they should, driven not by increased suicides or injuries, but poor physical health.”
Stigma also impacts where societal resources are allocated.
“The effects of mental health stigma are pervasive, affecting political enthusiasm, charitable fundraising, and availability and support for local services,” according to The Lancet editorial. “This extends to research and clinical practice, from the low status of psychiatry as a clinical and academic specialty to its meager portion of research spending relative to disease burden.”
And stigma doesn’t just impact those suffering from mental illness. It can also ostracize from society the family and loved ones of people with mental illness.
But stigma is an elusive enemy to fight, said Kathy Coates, a Steamboat Springs resident and mother to a son who has struggled with mental illness for nearly his entire life.
“It’s invisible to everybody who experiences it,” she said.
For several years, Coates has been working to start a Yampa Valley chapter of NAMI, or National Alliance on Mental Illness, an organization dedicated to providing “advocacy, education, support and public awareness so that all individuals and families affected by mental illness can build better lives.”
Coates helped to launch a family-to-family support and resource group for the loved ones of people with mental illness.
While stigma isn’t easy to define, or identify where it comes from, Coates is painfully aware of the negative impacts it has had on her 36-year-old son Jeff.
When it comes to mental illness, Coates said, “people are terrified. They can’t get away fast enough.”
No one gets stigmatized for having asthma, she added.
What is stigma?
Merriam Webster defines stigma as “a mark of shame or discredit.”
It is also defined as being viewed negatively or discriminated against because of a mental illness.
When family members are shunned or kids bullied because of their mental illness, that is stigma.
When people are fired, jailed or kicked out of their homes because of their mental illness when not causing harm to others, that is stigma.
When a mentally ill person is depicted as violent or dangerous onscreen or by the media, that is stigma.
When a person doesn’t seek help because they know society will view them negatively, that is stigma.
When a person is denied insurance coverage that would be given for a physical illness, that is stigma.
When a person’s mental illness is viewed as a weakness, a moral failing or something they should “snap out of,” that is stigma.
Jeff was aware of stigma from a very young age, according to his mother Kathy Coates.
An astute judge of character and “Olympic caliber communicator,” Jeff could quickly gauge what kind of first impression people were forming about him — and that included the doctors.
Jeff’s mental illness has never been easy to define or diagnose, Coates said, but signs began to appear when he was about 7 years old.
He has a “neurological swirl” of mental health symptoms, she said, including attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), Tourette syndrome and a learning disability.
As an adult, Coates has watched her son gain footing as a self-sufficient member of society then lose everything, rebuild and then lose it all, again.
Stigma always played a role when Jeff lost apartments, friends and girlfriends, jobs and found himself in trouble with law enforcement, Coates said.
Just like a person doesn’t want cancer, Jeff doesn’t want those ups and downs, she said.
And Jeff doesn’t want to be stigmatized, but he also doesn’t hide from his mental illness, Coates said.
He openly communicates with others about how it affects his life and how it can affect his relationships.
“He’ll define all of it,” she said.
Because of his communication skills and social aptitude, some people don’t believe Jeff when he tries to explain his mental illness and think he is trying to manipulate or deceive them, Coates said.
Coates also sees how stigma impacts her own life and relationships — like how people are afraid to ask her how Jeff is doing and how they feel badly for her. And how they wonder if she did something wrong as a mother.
Jeff was adopted, and they now know his biological father may also battle mental illness, Coates said. And while those connections may assuage the questions of others, it doesn’t change any of the challenges Jeff faces in his daily life.
Coates has seen children showing signs of mental illness, but parents who are loathe to consider the potential for that type of diagnosis.
And in those cases, stigma can stop people from getting treatment for their children.
They don’t want to acknowledge the possibility their child might be in a category like Jeff.
“They just can’t have that, and that’s gotta be stigma,” she said.
But while stigma is a formidable foe, there has been an increased awareness and focused effort in battling it.
There is still a long way to go but also hope on a number of fronts.
And there is one key step advocates and professionals repeatedly point to — something everyone can do and do immediately — talk about it.
Stigma and discrimination can contribute to worsening symptoms and reduced likelihood of getting treatment. A recent extensive review of research found that self-stigma leads to negative effects on recovery among people diagnosed with severe mental illnesses. Effects can include:
• Reduced hope
• Lower self-esteem
• Increased psychiatric symptoms
• Difficulties with social relationships
• Reduced likelihood of staying with treatment
• More difficulties at work
Some of the other harmful effects of stigma can include:
• Reluctance to seek help or treatment and less likely to stay with treatment
• Social isolation
• Lack of understanding by family, friends, coworkers or others
• Fewer opportunities for work, school or social activities or trouble finding housing
• Bullying, physical violence or harassment
• Health insurance that doesn’t adequately cover your mental illness treatment
• The belief that you’ll never succeed at certain challenges or can’t improve your situation
Source: Adapted from Mayo Clinic
Starting the conversation
Comedian Frank King attacks stigma by making people laugh about suicide.
“My goal is simply to make talking about depression and thoughts of suicide as easy as talking about sports and the weather,” King said.
King, who was the keynote speaker at the 2019 Wellness Conference in Steamboat Springs, has given six TED Talks about mental health and teaches a mental health first aid class for youth and adults.
There’s a rule in comedy under which “you can make fun of any group to which you belong,” King said.
He belongs to two groups in terms of mental illness: major depressive disorder and chronic suicidal ideation.
Kings talks very openly about his experiences — which include finding his mother and great aunt after they killed themselves and the time he very nearly pulled the trigger on himself.
“Spoiler alert,” he tells his audience. “I didn’t do it.”
They don’t know whether or not to laugh.
But as suicide and mental illness are things people don’t like to talk about, King finds that when he does, almost everyone has a story of their own.
And when King talks about chronic suicidal ideation, there is always someone in his audience who experiences it but never knew there was a name for it. They thought they were alone.
King finds the “myth” that you shouldn’t talk about suicide to a depressed person because it might give them the idea pretty hilarious. As if they will suddenly say, “Suicide? What a great idea. Why didn’t I think of that?”
“Depression and thoughts of suicide are difficult to talk about for a lot of reasons,” King said. First, people “don’t know what to say, so they don’t say anything. And second, they are afraid they will say the wrong thing.”
And suicide is frightening — and drastic. Once someone tells you they’ve thought about it, King said, “now you are on the hook to dissuade me. I’ve made you responsible. That’s why people don’t ask the question, because they are afraid of the answer.”
But being able to ask whether someone is thinking about suicide is critical.
Nine out of 10 people give signs before they attempt or complete suicide, King said.
“The vast majority of people want somebody to notice and somebody to step in,” King said. “We just have to be willing to step outside of our comfort zone and have the conversation.”
King gave his first TED Talk at 58.
“No one in my family knew I was living with depression and thoughts of suicide,” he said. “I came out on stage.”
The upside of coming out, he said, “is finding people who know you and love you and who you can trust to share your struggles with so they can be there for you.”
And now his wife understands that if he’s scowling, it’s not because of anything she has done.
“You need a pit crew,” he said. “Not when the tires are coming off — that’s not the time to hire a pit crew.”
As more celebrities open up about their mental health, King said it makes it easier for other people to talk about it.
Olympic swimmer Michael Phelps appearing in commercials for virtual therapy, for example, goes a long way toward reducing stigma. And when Kate Spade and Anthony Bourdain died by suicide, King said people constantly asked him why.
Those high profile losses come with massive ripple effects. But they can also be an opportunity to start a conversation, increase awareness and reduce stigma.
“They probably didn’t want to die — they just wanted to end the pain,” King said.
At REPS — Representing Everyone Preventing Suicide — one of Executive Director Mindy Marriott’s primary focuses is on stigma reduction.
When it comes to suicide, “stigma only leads to silence,” Marriott said. And the silence only increases the feelings of isolation for those impacted by suicide.
“When someone dies by suicide, the aftermath opens up an immediate opportunity to talk about suicide as a public health issue that affects all of us,” she said. “We all have a role to play in prevention and decreasing stigma by sharing our story.”
Marriott has created a project specifically focused on reducing stigma among youth. It’s called Project HOPE, and it encourages young people to share stories about their mental health.
Sharing stories is incredibly powerful and something that’s increasingly more common in the era of social media. There are more and more pages and groups devoted to mental illness, which act as a doorway where they can ask and answer questions, connect to resources, find a safe and supportive place to share stories and feel less alone.
West Springs Hospital Medical Director Dr. Frank Lotrich said he does see some stigma decreasing around depression and anxiety, but less around suicide and schizophrenia.
Lotrich believes the biggest hope in stigma reduction comes from people who have a mental illness.
Real change, he said, “requires patients themselves to be brave. They need to own their illness and accept it and advocate for themselves.”
He also wants people to “call stigma out when we see it.”
Language matters, Lotrich said. Calling it “mental health issues” as opposed to a disease, he said, belittles what that person is going through.
“That makes people less likely to want to get help,” he said. “They do not want to go to the doctor for ‘issues.’ That makes therapy seem like something anyone can do — like you just need a good, understanding friend to listen.”
The National Alliance on Mental Illness, or NAMI, offers some suggestions about what we can do as individuals to help reduce the stigma of mental illness:
• Talk openly about mental health, such as sharing on social media.
• Educate yourself and others — respond to misperceptions or negative comments by sharing facts and experiences.
• Be conscious of language — remind people that words matter.
• Encourage equality between physical and mental illness — draw comparisons to how they would treat someone with cancer or diabetes.
• Show compassion for those with mental illness.
• Be honest about treatment — normalize mental health treatment, just like other health care treatment.
• Let the media know when they are using stigmatizing language presenting stories of mental illness in a stigmatizing way.
• Choose empowerment over shame. “I fight stigma by choosing to live an empowered life. to me, that means owning my life and my story and refusing to allow others to dictate how I view myself or how I feel about myself.” – Val Fletcher, responding on Facebook to the question, How do you fight stigma?
If King could take a magic pill that would take all his depression away but also remove his comedic creativity, he wouldn’t do it.
He believes his mental illness is essential to his talent as a comedian and speaker.
In King’s experience, every high functioning person he’s encountered with a mental illness has a “super power” — a skill and passion at which they excel.
In that context, King likes to view the illness not as a genetic mutation but an “amazing evolutional adaptation” or a “desirable disadvantage.”
King works to help people change the framework.
“Yes, you have a mental illness, but you also have a set of abilities your peers can’t touch,” he says.
In the book “Nobody’s Normal,” author Roy Richard Grinker chronicles the history of how societies have dealt with mental illness, and he writes, “Our judgments about mental illnesses have come from our definitions of what, at different times and places, people consider the ideal society and the ideal person.”
In an effort to move away from language of deficits, disorders and impairments, the terms neurodiversity or neurodivergent, as opposed to neurotypical, are used for people whose brains may operate a little differently, “… a concept where neurological differences are to be recognized and respected as any other human variation,” according to the National Symposium on Neurodiversity.
“We need to treat whatever is wrong, but let’s wrap our arms around whatever is right,” King said.
King doesn’t use the words “fight depression,” because that would imply there’s a way to win. Instead, he focuses on living with depression and putting mechanisms in place to pull him out of the downward spirals.
“Nobody’s normal,” Grinker writes. “And since we have for so long used the concept of normal to decide who we accept into our social worlds and who we reject, it’s about time we recognize that normal is a damaging illusion.”
King identifies other benefits that come with his mental illness, such as a more realistic view of the world and a greater appreciation for life, in already having crossed the threshold of knowing, “I can kill myself at any time.”
King said during the pandemic he’s been more worried about his “neurotypical friends” than those with a mental illness.
People who live with depression usually already have coping techniques. Pandemic or not, “I wake up in an uncertain world,” he said. But for those for whom the pandemic “turned their world completely upside down — those are the people I worry about.”
Mental health is physical health
One concrete effort in combating the tricky foe of stigma comes with the mobilization toward integrated medicine, which looks different in different settings but essentially provides for routine mental health screenings alongside routine physical care in a single location.
“Mental health care is health care,” said Dr. Lilia Luna, behavioral health director and licensed behavioral psychologist for Northwest Colorado Health.
The central goals for behavioral health care at Northwest Colorado Health, Luna said, is to build the infrastructure, increase access and “destigmatize mental health care as part of health care.”
Part of that means simply starting the conversation, as well as screening every patient.
“We are taking care of a person as a whole person, instead of taking care of the mind separate from the body,” Luna said. “Our emotional health lives in our body. Somewhere along the way, we separated the two, and that’s caused a lot of angst and stigma.”
The movement toward integrated medicine has gained a lot of momentum over the past couple of decades, Luna said.
“In order to best care for people, we need to have this integration and understand that our emotional or mental health does exist within our physical health — and vice versa,” she said.
While some medical practices integrate medicine through referrals and collaborative partnerships, Yampa Valley Medical Associates in Steamboat Springs has an in-house behavioral health specialist — a growing trend.
“A big piece of what I do is in combating stigma and meeting patients where they are,” said licensed professional counselor Leah Hemeyer. “Having behavioral health care in primary care is no longer an unusual thing.”
Hemeyer has been working in the realm of integrated care in the Yampa Valley for about 15 years and has been at YVMA since 2014.
“I’m embedded in our clinic,” she said. “I’m part of the treatment team. It’s just part of what we do in treating the whole person.”
After a mental health screening indicates a need for further evaluation, Hemeyer is introduced to patients by their regular primary care providers.
And everyone is screened. It is part of the conversation from the start, she said.
“We recognize it is part of who we are, and we cannot treat the whole person without acknowledging the mental health piece.”
The integrated approach helps build trust, she said, and there is the benefit of not having to wait.
“There is a lot of value in getting help in that moment,” she said.
Hemeyer doesn’t provide long-term care, but she helps patients make the connection to whatever is the next step — therapy, substance abuse counseling or things like food and housing assistance. And she doesn’t just address mental illness diagnoses — she talks to patients about stress, sleep and other things happening in their lives.
If a patient receives a diagnosis of diabetes, she helps with the emotional piece of having a new health condition and assists with strategies to adapt. She introduces cognitive behavioral approaches to deal with things like chronic pain.
“We all have mental health,” Hemeyer said. “We all need to address our overall well-being.”
And Hemeyer sees a potential silver lining in the pandemic through the universal added stress it brought on, which made people more willing to talk about how they are feeling and more willing to seek help.
“I do see a shift to a more open conversation around mental health, because I think we’ve all felt it over the past year,” she said.
For Coates, the things she believes would help the most in reducing stigma in her son’s life are fairly simple. She wants people to listen to him when he is trying to explain his illness and what he needs.
When he needs 10 minutes to allow an episode to pass, she wants employers and others to try to accommodate that.
And she wants people to listen to mothers like her when they have concerns about their own children and think mental illness may be a factor. She doesn’t want those concerns dismissed, like hers too often were.
Right now, Jeff is on a really good stretch, Coates said. She’s optimistic with a lot of trepidation. And a lot of his success will depend on others and their ability to beat stigma, she said.
His mental illness is never going away. He’s accepted that, and he’s learned how to communicate where he struggles and what helps.
It’s now time for others to listen, Coates said, and be more educated, open and accepting.
To reach Kari Dequine Harden, call 970-871-4205, email kharden@SteamboatPilot.com or follow her on Twitter @kariharden.
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