The Shame of Stigma

by Elin Widdifield

shameLast week in a book group I facilitated, the topic of “shame” was raised during discussion of author Wally Lamb’s latest novel, We Are Water. One of the main characters, Annie Oh, had been sexually abused as a child. Her shame was wrapped up in guilt and loss, and as a foster child, she received no professional help. She no doubt felt confused, angry, and she lived in a tangled web of shame and secrecy. For years, her anger festered, expressed in her “outsider art” and by abusing her son. Shame, guilt, and secrets caused darkness and deep troubles in Annie Oh’s family.

What is shame? Merriam-Webster defines shame as: A feeling of guilt, regret, or sadness that you have because you know you have done something wrong. Ability to feel guilt, regret, or embarrassment, dishonor or disgrace

From the Oxford Dictionary we can add: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior. (Emphasis in bold is mine.)

Shame can be useful for enforcing behaviors that keep individuals and others safe in a society. We want criminals to feel shame for socially unacceptable actions. Unfortunately, many criminals are sociopaths, incapable of feeling empathy, guilt, or shame, which can create frustration for those of us who do experience and respond to these emotions and/or have been a crime victim. Most all of us have felt shame at some point in our lives, perhaps as a child, when learning society’s code of ethics from elders. Sadly, some, like Lamb’s Annie Oh character, carry an undeserved burden of shame throughout life.

​T​he Oxford Dictionary says, shame is a distress caused by the consciousness of wrong or foolish behavior. What is perplexing, and not included in the Oxford or Webster definition, is that too often people feel shame for events out of their control, such as being abused as a child or born with a brain that is wired for a mental illness.

What does shame do? Shame isolates, leads to secrecy and to hiding one’s truth. Shame denies one the ability to make honest appraisal of oneself, one’s life. Shame is the foundation of stigma and most devastatingly results in a reluctance to acknowledge illness and/or seek treatment.

How many times has the media squawked bafflement that an individual who has caused their own death or harm to others had lived with undiagnosed or untreated mental illness? “How could a person or their loved ones ignore obvious symptoms of mental illness,” they ask?

Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar…

For those of us who have a loved one living with a mental illness (most of whom are NOT a danger to others), it is not surprising a person fails to seek treatment, or that loved ones weren’t successful in enforcing treatment. Our society feeds the stigma of mental illness with its solid diet of… yes, shame. Rarely is a person praised for their hard work of addressing their mental illness and undergoing treatment. It’s usually discussed in hushed tones. Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar, and this despite the long list of highly successful individuals living with brain disorders.

How can we help to detangle this mess of shame, guilt, and secrecy, and diminish stigma?

We can speak about brain disorders openly in the same way we speak about physical disorders. Caregivers, family members, and loved ones must speak up about needing support. Those looking from the outside see no crutches, casts, or blood. Yet, in the home, loved ones are subject to the ill person’s extreme behavioral changes that cause chaos in all the lives around him. Loved ones must change plans as quickly as they are made; they often seem distracted and are overwhelmed. But those looking in from the outside don’t know the truth unless it is spoken about.

Starting a conversation about the impact of a loved one’s brain disorder on our family, and more broadly, our society, is not always comfortable. We still encounter a tone-deafness about mental illness. Recently, when talking about interviewing people all over the country for Behind the wall, a man interjected, “You mean you found crazies all over the country?” I bit my tongue and, after a beat and a breath, I continued my effort to share information about mental illness. Some will back away, because this illness has nothing to do with them or their family. And that’s​ okay. Fortunately, in our experience, most people to whom we speak about Behind the Wall do understand or want to learn about brain disorders.

For the sake of our neighbors, friends, and because of the prevalence of mental illness across the globe, we continue to share what we know about brain disorders in an effort to reduce stigma and encourage individuals to seek treatment. Speaking openly, without shame, is beneficial for a whole society. We can have stronger and safer communities when our citizens who live with mental illness are not afraid to be diagnosed and treated. National Alliance on Mental Illness (NAMI) states the importance of encouraging quality (evidence based) treatment in terms anyone can relate to:

​The human and economic toll is enormous yet often hidden. Untreated mental illnesses in the U.S. cost more than $100 billion a year in lost productivity… Local hospitals and clinics must cope with associated chronic physical diseases. Schools have to open more special education classes. Courts and jails handle a large number of individuals who suffer from untreated mental illnesses. Suicide ranks among the top fifteen most common killers in the U.S. (in the top three among young people), and 90 percent of cases can be attributed to mental illness.

Our society must take responsibility to learn symptoms of an active mental illness. Those of us with experience, and who understand the illness, can lead this effort. An effective step in this endeavor is to demand in our communities that law enforcement, first responders, educators, and anyone else interfacing with the public are properly trained to recognize symptoms of brain disorders and learn how to interact with a person in mental health crisis. ​Brain disorders cause people to behave in odd ways. No doubt. A person with a mental illness may respond to his own inner processes, which may include frightening voices or paranoid beliefs. Atypical brain activity caused by the illness may be reflected an appearance of “not being all there,” and his responses are unpredictable to outsiders. Understanding brain disorders requires respecting that the input affecting his brain processes is unknowable and that his responses to these inputs influence behaviors that are odd and possibly frightening to an outside observer, or family member. These are behaviors of untreated mental illness, or of a person who has experienced a relapse.

We can all play a part in identifying misplaced shame for an illness that wasn’t chosen by the ill person and the foolish behavior symptomatic of the illness is out of one’s control. We can all do our part to reduce stigma so that people will seek and receive treatment.

We can stop assuming that living with mental illness equates to an inability to hold down a job and living a fulfilling life. Most people who are treated for serious mental illness live full and meaningful lives.

Our faith communities and workplace can be inclusive by understanding that the illness has symptoms that should not be conflated with a person’s character, or behaviors when they are well. We can support a person who lives with mental illness by providing a route for skill-building and work experience.

We can support caregivers of people living with mental illness by simply listening, taking a walk, or having coffee together.

There are many organizations whose mission it is to support individuals and families of those living with mental illness and to address stigma. Among the many, check out:

www.BringChange2Mind.org

www.healthyplace.org

www.activeminds.org

www.behindthewallstories.com

www.SZmagazine.com

www.thekennedyforum.org

As always, your comments are most welcome:

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It Has To Be Said But Sadly, This Gun Massacre Post Is Always Timely

“Paz” by Mark Abercrombie

I wrote this post a while ago. Or, shall I say, I’m writing to post sometime in the future because unfortunately it will be timely again.

The nation is again saddened by the shooting massacre in ­_________.  I’m not sure a person can ever become callous to learning of a reckless, preventable shooting spree resulting in the premature end to many lives. This act of rage and violence follows a pattern we know all too well: the shooter is a young man who felt like an outsider his whole life and maybe was recently humiliated in some manner. Maybe he is a military veteran. He was taunted. He had few friends. He became enraged because of an altercation with (check one: family member, former school mate, employee, or employer). The media wants to know, not if, but what signs of mental illness did he display, and when?

Likely, his past history of mental illness was either never addressed effectively because his parents / loved ones couldn’t commit him against his will because by the time it was recognized that he was seriously ill, he was over eighteen, or his parents / loved ones didn’t address his behaviors because of the stigma around mental illness. But a few who knew him— former schoolmates or coworkers, because he had few friends, mention something about him was “different.” He managed to get his hands on weaponry that made him falsely feel empowered. Along with body armor, he carried an AR-15 style assault rifle, the same weapon used in June 2013 by the Santa Monica killer and in December 2012 in Newtown. On his person, he may have had a handgun and additional magazines. Certainly, he had more than one weapon on him.

Is that about right?

As I write this on a random summer day, I know there are mothers whose adult child has been diagnosed with a serious mental illness such as bipolar disorder or schizophrenia, who are, on the day this is published and the weeks that follow, cringing. There are thousands of mothers both uncomfortable and well versed in this conversation about mental illness. I know because this is what they have told me. When these killing sprees occur, society wants to assign blame and often turn to the parents. They ask, “Why didn’t the parents / loved ones do something?”

Parents of adult children diagnosed with serious mental illness cringe because those who do not understand mental illness will look upon them and say, “Aren’t you afraid your mentally ill child will hurt you?”

Because our society conflates mental illness and violence, perpetuating the myth that a mental illness diagnosis indicates , no, predetermines that a person is more likely to commit a violent act. But violent tendencies occur in people in equal rates whether diagnosed with a serious mental illness or not. Statistically, according to NIMH, most violence inflicted by a mentally ill person is self-harm, that is, not perpetrated on others. And yet, after every mass shooting, media and society rub mental illness and violence together, contributing to the frothy stigma damaging to those living with mental illness and arguably to our society as a whole.

Still, other parents whose children live with serious mental illness cringe because they have witnessed erratic behavior associated with certain mental illness crisis, such as psychotic episodes that include delusional thinking. These parents, more than anyone, know how difficult it is to get an adult person committed and adequately treated before they do become dangerous, most usually to themselves. These parents also know how our health care system makes it challenging to keep them in for full treatment. These parents also cringe because they know when their child is psychotic and on the street, there is a risk law enforcement will misconstrue their behavior and their mentally unstable child will either be shot or land in jail while still in a psychotic state. And it’s not like they’ll receive adequate treatment in jail either.

These parents include Kerry, the mother who called the university to inform the counseling center that her son had gone off his medication, was drinking heavily, and had smashed everything in his dorm room. Kerry warned the school hoping to get support. Instead she was told, “Our hands are tied.” Then they told her, that yes they know his history, that he may have gone off his meds, that he may be wandering about not knowing where he is but he hasn’t failed his classes yet and we can’t (or won’t) prove he is a danger to himself or others. Even though the last time this happened, he almost perished from alcohol poisoning and hypothermia.

The mental illness stigma circles around the misperception that a person diagnosed with mental illness is dangerous to everyone around him, and that there is no hope for a person diagnosed with mental illness. But there is hope unless the stigma impedes loved ones and the ill person from accepting the illness and seeking effective long-range treatment. Stigma is a barrier to treatment.

In the many hours of the news cycle ahead of us, and days and weeks ahead, one wonders if it is possible to have a real discussions about the confluence of factors leading to gun violence and other- separate conversations about the many possible causes and treatments for mental illness, and recognize the connecting point between the two are but a pinpoint that can be made even finer with more accurate dialogue.   

As always, we welcome your comments.