Opine Fresh

‘How Goes the Battle?’ Misconception & Mental Illness

Posted in Uncategorized by opinefresh on October 12, 2009

Benita Walker hates the mentally ill.

“I’m a spouse, I’m a homeowner, I’m a baseball fan, I’m a gardener, and I also happen to have a mental illness,” said Benita Walker. “That mental illness is just one aspect of my life, and it doesn’t define who I am.”

Hates the term “the mentally ill” that is.

The mentally ill are all the same. The mentally ill are intellectually impaired. The mentally ill are all violent and unpredictable. These are common stereotypes associated with mental illness. They are not true. In fact, people with mental illnesses are not “the mentally ill” at all.

Using the broad term “the mentally ill” does a disservice as it implies a homogeneous group of people, all the same and defined by their illnesses. An alternative to this term is “people with mental illness.” It is called people first language, and it is a term individuals with mental illness, or any disorder, tend to prefer so it is clear they are a person first and their illness is secondary. People first language promotes dignity and respect.

“We don’t say ‘the cancerous,’” explained Benita Walker, a Peer Support Specialist for the Veterans Administration Community Support Program who has bipolar disorder. Walker says she has learned a lot about herself as a result of having her mental illness.

“I think in general I know myself a lot better than I would know myself if I didn’t have a mental illness because I’ve really had to kind of study all aspects of myself,” said Walker. “I’ve also met a lot of really good people having a mental illness. A lot of other consumers are really strong people and courageous people.

“I think it requires a lot of courage to get through it, but it’s not a death sentence, it’s not the end of the world,” said Walker about living with bipolar disorder. “As a peer support specialist I act as kind of a role model to clients and let them know that having a mental illness isn’t the end of their life and they can still have a good quality life with having a mental illness.”

It is estimated that mental illness affects one in five families in the United States, according to the National Alliance on Mental Illness (NAMI), the nation’s largest mental health organization dedicated to improving the lives of persons living with serious mental illness and their families.

Mere mention of mental illness can render people uncomfortable. Stigma surrounding mental illness has been present since discovery, with lack of understanding fueling the unease.

“The public is very, very misinformed about mental illness,” said Kenneth Herrmann, Assistant Professor in the School of Medicine and Public Health at UW-Madison.

Past theories for the cause of mental illness have run the gamut, from blaming parents to declaring those afflicted as “victims of labeling.” Though no one knows with certainty the exact causes of certain illnesses, today the role of genetics, in combination with environmental factors, is widely accepted as a primary cause of mental illness. Brain chemistry and chemical imbalances of neurotransmitters that help relay signals to the brain and regulate mood are known factors.

Although great strides have been made in uncovering the complex causes of mental illness, and in illuminating its effects on the afflicted and those affected, stigma still lingers.

“It’s our minds that make us distinctly human,” said Mona Wasow, Clinical Emeritus Professor in the School of Social Work at UW-Madison and author of The Skipping Stone. “When that goes awry, then we don’t know what to do. It just makes us very uncomfortable and we don’t know how to communicate.”

People with mental illnesses are a group of citizens often misunderstood and undervalued. Lack of understanding about mental illness has been attributed to misinformation perpetuated by stereotypical and sensationalized media portrayals, which tend to fuel misconceptions and stigma surrounding the mentally ill.

“I think it’s atrocious actually. On so many TV shows you always see the person with a mental illness as being this violent, out of control person,” said Walker. “That’s the typical stereotype you see in those cop shows and things like that.”

Herrmann agrees “Hollywood does a terrible job” at portraying mental illness, adding that news media may often tend to sensationalize stories of tragedy involving people with mental illness.

“Newspapers blow up every ‘mad-man that goes nuts’ story, that’s what sells papers,” said Wasow. “So one of the common stigmas and misperceptions in our culture is that the mentally ill are violent. In reality, there is less violence among the mentally ill than the non-mentally ill.”

The vast majority of people who have a mental illness are no more violent than anyone else. Studies show mental illness is a poor predictor of violence, ranking well after other factors such as youth, male gender, history of violence and poverty.

A person’s mental health status is usually only highlighted in stories of tragedy, perpetuating the stigma associated with mental illness. When these portrayals are all the public sees—events that are the exception, not the norm—it becomes the public perception.

The Virginia Tech tragedy was the most recent national event to ignite hysteria surrounding violence and the mentally ill.

“You sort of cringe when episodes like that happen, just because it kind of ends up affecting all people with mental illness,” said Walker. “Because people get scared and assume that is the norm, and this is what people with mental illness are like because they don’t see a story about so-and-so who has a mental illness who goes to their job everyday, has a family, volunteers. They don’t publicize that, they just publicize the really bad incidents.”

The general lack of understanding among the public about mental illness can leave those afflicted feeling isolated from others. This stigma can discourage people with mental illness and their families from seeking help, afraid of the shame misperceptions can cause.

“Being schizoaffective, I know what it’s like to fear people are going to judge you, and some of them do,” said Nicole, 25. “A lot of people just don’t understand what it’s all about. I read a quote once, ‘when you have cancer, people send flowers, when you lose your mind, they don’t.’ It’s so true.

“Schizoaffective disorder is just like a physical illness, the symptoms just show themselves mentally,” said Nicole. “You shouldn’t judge people differently because they have a mental illness, or any illness. I didn’t ask to be bipolar.”

Nicole has the bipolar subtype of schizoaffective disorder, a mental illness that affects about 0.3 percent of the population. When not properly medicated she suffers from extreme shifts in energy, functioning and mood, and can switch between periods of mania and depression. Also when not regulated, Nicole experiences severe psychotic episodes of manic energy coupled with delusional thinking, hallucinations and disorganized speech and behavior not unlike schizophrenia.

Diagnosing mental disorders can prove challenging for mental health professionals. It can be difficult to diagnose between illnesses such as bipolar disorder, schizoaffective disorder and schizophrenia. Often psychiatrists diagnose bipolar disorder before schizophrenia, as the former has a better prognosis. If the individual doesn’t come out of psychosis, however, they may end up with a new diagnosis of schizoaffective disorder or schizophrenia.

“Patients may be misdiagnosed to begin with, but not out of negligence, just usually well-meaning,” said Herrmann, referencing the better prognosis for bipolar patients. “There are no tests to help us with this distinction.”

Benita Walker was diagnosed with bipolar disorder in 1989. After a severe episode of depression in the winter and spring, Walker saw a doctor and was diagnosed with major depression. In June she suffered a severe manic episode with psychosis and was hospitalized for two weeks, where she was diagnosed with bipolar disorder. She was 27.

“One of the things I did—this is a funny story about my mom—was I walked into the ER at University Hospital and said, ‘Hi, I’m Jackie Kennedy.’ And when my mother heard this she said, ‘Jackie Kennedy, what were you thinking of? Couldn’t you have at least said Eleanor Roosevelt?’ So it wasn’t so much that I was psychotic, but I picked the wrong role model.”

Her mother was reluctant to admit Walker was ill, likely because of the stigma that accompanies mental illness.

“That’s the funny thing, my mom would say, ‘Oh no, we don’t have it in our family.’ Then every time I talked to her more it would come out that so-and-so had been in the state mental institution,” said Walker. “But she’d say, ‘Oh, that’s because he lost his job, or that’s cause his wife left him.’ You know—but she had a reason for everything, but nonetheless…

“It’s clear to me with what I know now that I was having symptoms way back into my high school years,” said Walker, “and they were just never severe enough to get caught, and it was just getting gradually more severe as I got older.”

In the past, a prognosis of mental illness meant little prospects for recovery.

“The original name for schizophrenia was Dementia Praecox, meaning you go downhill steadily,” said Wasow. “That’s how it used to be thought of.” Over time the emphasis in treatment of mental illness shifted to a recovery movement.

“If someone is parapalegic, you don’t just throw them in a bed and say, ‘that’s it,’” said Wasow. “You work toward whatever recovery they can make. At long last they’re doing this now with mental illness.”

Pinpointing the exact mental illness an individual suffers from is important before proceeding with treatment.

“It’s like the word cancer—it’s almost meaningless unless you know what kind of cancer,” said Wasow. “Harmless skin cancer ain’t advanced lung cancer. That’s true with mental illnesses too.”

It can be frustrating for patients and their families when questions linger about diagnosis. Also frustrating—and often heartbreaking for families—is when patients refuse treatment or medication. Under Wisconsin law, individuals have the right to refuse medication and treatment except when there is a life-threatening situation, or it is necessary to prevent physical harm to the individual or others. Ironically, individuals mentally ill enough to require hospitalization are often unable to make rational decisions in their best interest, and proving life-threatening or harmful circumstances can be challenging for families.

“It’s the only illness where it’s hard to get into the hospital. Any other illness they applaud you if you go for early care,” said Wasow. “Mental illness is the only illness where it has to metastasize before they’ll let you in, then they let you out too soon.”

The only avenue to seek involuntary help for an adult individual with severe mental illness is to call authorities, setting in motion a complex web of police records and court proceedings—a flawed justice system at times ill-equipped and illogical when dealing with cases of mental illness.

Nicole and her family recently endured a tumultuous summer triggered by a medication change made necessary by side-effects caused by an anti-psychotic medication that was causing the onset of dystonia. The neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures, was causing her intense pain when walking. Side-effects are common with medications used to treat mental illness, ranging from the mild to the severe.

For Nicole, it is a constant struggle between mind and mobility.

Nicole suffered a severe psychotic episode when her dosage was lowered that caused her to be admitted to a psychiatric hospital one evening in early May. By the next morning she wanted out. Nicole had to attend a court hearing so a judge could evaluate whether she was competent to check herself out of the hospital. The judge ruled Nicole of sound mind, and she was able to check out of the facility. The seething irony is that Nicole delusionally thought her public defender, hired to prove she was in fact sane, was her stepsister, Bethany, who she has never met.

Further complicating matters, confidentiality laws prevent family members from receiving information about court and hospital proceedings, unless given signed consent from the patient. Mental health laws and procedures pose ironic obstacles to families desperately seeking help for their mentally ill loved one.

“Families finally give up and go to the doctor when they’ve tried everything on their own and they’re ready to blow their brains out,” said Wasow. “They’re in crisis.

“The thing that’s crazy is because of these confidentiality laws, they don’t share information,” said Wasow. “What other illness do they do that? You have a heart attack, you go to the E.R., and 10 minutes later someone comes out and talks to the family…and educates them about what to do. Only in mental illness.”

“That’s the thing that really frustrated my family about the whole situation. This was the first time I was committed to a psychiatric hospital as an adult,” said Nicole. “Since I was no longer a minor, my family was unable to get much information about what was going on.”

After checking herself out of the hospital, Nicole returned home to live with her mother and father. She was home for six weeks that her mother described as “very difficult, exhausting and calamitous,” saying she “felt like a keystone cop out of the old silent movies.” She had to be watched constantly because she would often try to leave the house on her own. While her doctor was implementing a trial-and-error of new medications, Nicole was manic, erratic and irrational, detached from reality, and barely sleeping. She delusionally believed she was pregnant.

One morning in June, Nicole got hold of a telephone and dialed 911. She told the dispatcher she was suicidal and so were her parents. Nicole says she does not know why she said that, but remembers she wanted out of the house. She was later placed under court ordered treatment and Nicole was handcuffed, shackled and transported by squad car—standard procedure in such a case—to a mental health facility.

Her mother was not pleased with the protocol, disgusted her sick daughter must be handcuffed, and that the family could not drive Nicole to the hospital themselves, a half-hour trip. She said she was both brokenhearted and relieved to watch her daughter depart, sad it was necessary but happy she’d receive the care she needed.

“I was recently horrified to hear they’re still handcuffing,” said Wasow, who has a son that has schizophrenia. “It is one of the most horrible memories of my whole life that they handcuffed him.”

Wasow applauds the humane intention of the patients’ rights laws, created to prevent mental patients from being involuntarily committed, essentially to be dumped into mental hospitals to be forgotten in the past. A tragic side-effect, she says, has been the prevention of those in desperate need from receiving treatment against their will. The system meant to protect the rights of the mentally ill can fail their health and safety needs.

“Such outrages of the past must be corrected, but not by swinging blindly to the opposite extreme,” Wasow wrote in an article appearing in a 1978 issue of “Health and Social Work.”

It is 30 years later, and though great strides have been made in understanding the causes and effects of mental illness, little has changed in regard to the legal system dealing with individuals with mental illness. Recent innovations such as mental health courts have begun to crop up in cities like Toronto, but for now remain a distant reality in the United States.

Organizations like the NAMI have revolutionized thinking about mental illness. They continue to fight for the rights of those with mental illnesses and to increase awareness and understanding amongst the public; but the struggle wages on.

Wasow recalled a meeting she attended in Washington, D.C. 20 years ago during which 24 professional researchers, half with mentally ill family members, presented their research and findings about mental illness issues. Wasow remembers “three days sitting in a room, eight hour days, listening to 24 papers, all good.” The last paper was written by the head of research at the National Institute of Mental Health, and a Shakespeare quote he ended with struck a cord with Wasow, and stuck with her throughout the years:

“‘How goes the battle, sir?’

‘Oh, the battle goes well, but the troops, they do suffer so.’”

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