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Mentally Ill or Person With Mental Illness? A Word About Person-First Language

Some people are quick to criticize the use of the term “mentally ill” instead of “person with mental illness,” arguing that we should always use “person-first” language. 

The insistence of person-first language relies on the premise that people are more than their diagnosis and that mental illness is somehow shameful. But mental illness is a brain disease—there is nothing shameful about it. If you have a serious mental illness, it is a part of your identity. When you live with it every day and it affects every aspect of your life, how could it not be?

When I worked for a children’s hospital, we were told to always use person-first language: person with autism, individual with a disability, etc. It was drilled into our heads and practically a cardinal sin if someone accidentally wrote or said “autistic.” But it turns out, the people who were insisting on person-first language were not the ones who actually had these conditions.  

In the autism community, many object to person-first language and prefer to be called “autistic.” The notion of separating autism from the person implies that autism has a negative connotation. It adds stigma when there shouldn’t be. Likewise, deaf people reject person-first language, preferring instead “deaf person” or “hard-of-hearing person.” While society encourages people to disassociate themselves from the condition, others find that notion offensive.

While I understand the intent of person-first language, I wonder how many people who have mental illness are actually offended by the term “mentally ill.” When I read about people who object to using the words “mentally ill,” “bipolar” or “schizophrenic,” it is invariably a parent, a professional or a caregiver and not the person with the illness. To my knowledge, there is not a strong coalition of people with mental illness who are calling for person-first language.

Are diabetics ashamed to have diabetes? Are epileptics ashamed of their epilepsy? Of course not. Why should they be? They are illnesses. So why should we assume the mentally ill should be ashamed of their brain disorder? What we really should be ashamed of is discrimination of the mentally ill.

When we impose language on other groups, we should think about why. Perhaps we are the ones who are uncomfortable, not the ones with the illness. My point is that you shouldn’t be quick to speak for a group unless you are part of the group. Trying to be politically correct sometimes can cause more harm than good. 

What do you think? Do you disagree? I would love to hear your thoughts. 

Crisis Response Is Too Little Too Late for People With Mental Illness

About a decade ago, I attended a symposium put on by my employer about the social determinants of health in Baltimore City. One of the presenters told a parable—it was one I hadn’t heard before, but I have since heard it applied to a number of social problems. I think it has particular relevance for the problems entrenched in our dysfunctional mental health care system.

The story goes: A group of campers are settling down by a riverbed when one of them sees a baby floating down the river. He jumps in the water to save the child. Just as he is climbing out, another baby floats downstream, and another rescuer jumps in. One baby after another is swept by the current, and all the campers jump in, frantically saving as many babies as they can. 

Even after grabbing passersby to join in the rescue effort, they are still outnumbered by the task. They save some, but not all. Finally, one of the men starts walking away. “Where are you going?” they ask. “You guys keep on rescuing. I’m going to look upstream to see who keeps throwing babies in the water.”

And that is a perfect description of what is happening with our mental illness care system and crisis response for people with mental illness. We read story after story about the deadly encounters between law enforcement and people in mental health crises. And then a flurry of solutions are offered: Defund the police! Train police officers how to deescalate a crisis. Send a social worker out with the police. 

Unfortunately, these solutions are the equivalent of diving in to save the baby. By the time law enforcement comes on the scene, our system has already failed the person in crisis multiple times. Police shouldn’t be expected to deal with the result of our failed mental health system. To fix the problem, we need to look upstream.

Family members of people with chronic, serious mental illness know what a feat it is to get consistent, effective care for their loved one. Trying to get an adult treatment who doesn’t want it is futile. In our country, a person has the right to refuse treatment, even if they are experiencing a psychosis that impairs their ability to make decisions about their medical care.

People seeking treatment for mental illness face a catch-22—a person may be deemed not sick enough to gain admission to a hospital, yet if that person commits a crime due to their illness, we say, “Why didn’t they ask for help?”

In truth, our system denies medical help for people with mental illness until they reach a crisis point. We have seen it again and again.  

Daniel Prude was released from the emergency room without medication or treatment only hours before his encounter with police. His family tried in vain to get him help. 

Ricardo Muñoz, who was killed by police, suffered from paranoid schizophrenia. “He was sick,” Rulennis Muñoz said of her brother. “It’s not a crime to be sick.” His family had been trying to get him help for years. He was routinely in and out of hospitals, with little follow-up care in between. 

And there is this horrific story. According to the report, “In the month before she wielded a knife against her son, [the individual] had called the sheriff’s office seeking assistance with mental health problems.” She had been discharged from the hospital for mental health treatment 10 days earlier. This unspeakable tragedy could have been prevented.

We have to stop failing people with brain illness, their families and our communities. Crisis response for people with mental illness is not enough. More and more are barreling along the current, headed for tragedy. Advocates have put forth solutions. It’s time to go upstream and fix the root cause of the problem.

What Causes Schizophrenia?

No one knows exactly what causes schizophrenia, but we do know that it’s a brain disease. The brain is an incredibly complex organ. Connectivity of neurons, brain structure and chemical makeup all intersect, resulting in an organ responsible for every movement, breath, thought and behavior. 

Hundreds of millions of neurons form an intricate pattern to help us think, make decisions, communicate and experience life. For people with schizophrenia, the normal brain processes for some of these functions are impaired or disrupted—resulting in symptoms such as disordered thinking, altered perceptions, delusions and cognitive difficulties. Brain imaging of people with schizophrenia shows some of the abnormalities as reduced gray matter and disrupted neural connectivity

So schizophrenia is clearly a brain disease, but what causes it? Schizophrenia has a strong genetic component. Studies show that if one identical twin has schizophrenia, the other has a 40 to 50 percent chance of developing the disease even if raised separately.

The illness tends to run in families, and although a person may develop schizophrenia without any known relatives with the disease, a closer look at the family tree may reveal possible illnesses that went undiagnosed—an uncle or a cousin said to have behaved strangely or a relative who died by suicide or addiction.  

There is also a genetic link between schizophrenia and bipolar disorder, and mental illness and addiction, so it is not uncommon to have more than one of these illnesses in a family. Psychotic disorders may even exist on a spectrum, similar to the autism spectrum, rather than being discrete illnesses. 

Unfortunately, there is no single schizophrenia gene that could lead us to a definitive treatment or cure. Instead, studies indicate that there may be hundreds of genes involved

Some of the genes implicated are related to the immune system, but the exact nature of the link is unclear. One theory based on researchers’ findings is that these genes may have variations that result in over-pruning of brain synapses—an error of the naturally occurring brain maturation process that removes unneeded connections between neurons to improve brain efficiency. 

This excessive elimination of synapses may explain the impaired thinking, planning and cognition that occurs with schizophrenia. The pruning process typically happens in early adulthood—the same time that schizophrenia typically manifests.

Genetics alone does not explain schizophrenia. Scientists say there is also an environmental component. Contrary to theories that were popular long ago and may perhaps still be prevalent—schizophrenia is not caused by abuse or bad parenting. I can attest that my brother, who had schizophrenia, grew up in a loving, nurturing environment alongside me with no abuse or trauma. 

However, environmental factors can play a role. Genes and the environment can interplay and result in changes in brain development and functioning. Researchers have found that traumatic stress can alter gene expressions that make a person more vulnerable to psychiatric illness. Other studies have found correlations with infection, whether in utero or in life. There is also a link between cannabis use during adolescence and schizophrenia. 

Because we don’t know exactly what causes schizophrenia, we don’t have perfect treatments. Antipsychotics can help with some but not all symptoms, but we don’t know precisely why they work. And unfortunately, antipsychotics don’t work for everyone and they can cause severe side effects, including weight gain (which in turn, increases other health risks) and involuntary movements. 

Right now, these medications are the best treatments we have, and for most, the benefits of the medications outweigh the adverse side effects. But clearly, we need more research and more effective treatments.

And we need compassion. Given that schizophrenia and other mental illnesses are brain illnesses, I have never understood why people blame the sufferers. We see the homeless person muttering to themselves on the street and say, “Why don’t they get a job?” We joke about people ending up in the psych ward or ‘looney bin.’ We speak in hushed whispers about the student admitted to the psychiatric hospital as if it’s a shameful secret rather than an illness. We skip organizing a meal train for the mother whose son was diagnosed with a psychiatric disorder. 

Will this lack of compassion change once we find a definitive cause? I look forward to a world in which researchers find the long-awaited answer to what causes schizophrenia. I believe one day, probably not in my lifetime but someday, we will have safe, effective and compassionate treatment—and ultimately, a cure.

Discriminatory Laws Harm People With Mental Illness

It’s Mental Illness Awareness Week. But what we really need to be aware of are the discriminatory laws that harm people with mental illness and prevent treatment for the most seriously ill.

The recent death of Daniel Prude and other disturbing incidents have focused national attention on how police respond to mental health crises. But few people are investigating the failures of the mental health system that lead to these police encounters in the first place—failures that cut across all races and incomes.

The mental health system is hamstrung by a series of discriminatory laws that limit the number of crisis beds, prevent people from receiving treatment until they have deteriorated to the point of dangerousness and block families from participating in their care. The result is a disastrous and inadequate system of care for people with brain illnesses like schizophrenia and bipolar disorder.

In the case of Daniel Prude, he was taken to the emergency room for psychiatric care but released without treatment or medication hours before his fatal encounter with police. Why he was released so soon has not been fully answered, but if a person seeking treatment appears calm and rational during observation, most state laws allow them to leave whether they are in crisis or not. 

A spokesperson for the University of Rochester Medical System said in a statement that they are bound by a New York state law that prohibits hospitals from keeping a person involuntarily for more than 24 hours unless they are likely to cause serious harm to themselves or others and that requires immediate observation, care and hospital treatment. Doctors apparently determined that Prude didn’t meet this standard. 

The statement also called Prude’s care “medically appropriate and compassionate.” It was neither.

When we talk about mental illness awareness, we need to truly understand the nature of mental illness. Psychotic disorders like schizophrenia are brain illnesses that cause disordered thinking, delusions and altered perceptions of reality. The longer left untreated, the more damage occurs to the brain and the less likely they are to recover. 

Most people with untreated schizophrenia lack insight—they are so sick they don’t know they are ill. Known clinically as anosognosia, it is a symptom of the disease itself. If the organ responsible for thinking is impaired, rational decision-making may be impossible.

In the quest to protect a person’s civil rights, we end up taking away a person’s right to medically necessary treatment, leading to tragedy, jail or both. People with untreated serious mental illness cycle from hospital to the streets to jail and back again, and no one is held accountable. It’s a game of hot potato and everyone loses.

In Maryland, where I live, despite excellent hospitals and mobile community-based treatment programs such as assertive community treatment, the state laws governing mental health treatment are the worst in the nation, according to a recent report by the Treatment Advocacy Center

Maryland’s commitment laws do not consider a person’s history of psychiatric deterioration in the decision to admit and instead rely on an ambiguous standard of “danger to self or others” that is open to interpretation. 

And Maryland is one of only three states without assisted outpatient treatment—court-ordered treatment that can prevent people from ending up homeless, in jail or dead and restore meaningful lives.  

Until we remove the barriers to treatment, not only will we continue to see fatal encounters with police, but people with serious mental illness, their families and our communities will continue to suffer the consequences.

Equal Rights for All But the Mentally Ill

Of all the groups that have faced discrimination in our country’s history, one group stands alone. People with serious mental illness are the only group in which discrimination is still not only socially acceptable, but perfectly legal. 

Unless you have experienced mental illness in your family, you may be unaware of all the ways this discrimination exists. People with brain illnesses like schizophrenia and bipolar disorder are routinely denied medically necessary treatment based solely on their disability type. 

One way this happens is through laws that withhold treatment until the person has deteriorated to the point of dangerousness. When a person is experiencing a mental illness crisis, they will be turned away by the hospital unless they have threatened to harm others or have a plan to kill themselves. 

A person who does not meet the “danger” standard is left to deteriorate further. The longer psychosis is left untreated, the more damage occurs to the brain, and the worse their chances for recovery.

If a family does manage to get their loved one admitted for treatment, the person is inevitably discharged before they are medically stable. You need look no further than the daily headlines to see this play out again and again. 

Take this example: Three attacks linked to mental illness in 30 days leave five dead in Metro Detroit. Both the police and families sought treatment for the individual, and each time, they were released much too soon and with no follow-up. Not surprisingly, things ended in tragedy. 

Untreated mental illness results in danger, crime and tragedy—every day and in communities all across the country. And we let it happen over and over again. Not only does withholding treatment violate a person’s rights, but it also puts their families, the police and the public in danger. Why do we allow it?

We would never tell someone with cancer, “You are only in stage II, so we can’t treat you. Come back when it’s progressed to stage IV,” or say to a diabetic, “We can’t treat you until you are in a diabetic coma.” These scenarios are unthinkable, yet have become normalized in mental illness. 

It is morally wrong to deny treatment to any group based on their disability, so why is there an unspoken carveout for the mentally ill? Denying treatment to this group is blatant discrimination, yet it is somehow acceptable to doctors, hospital leaders, politicians and the general public. 

Why is one group of disabled people deemed less worthy than others? Is a person with autism or brain cancer more worthy than a person with schizophrenia? Is a person with Parkinson’s or dementia more valuable than a person with bipolar?

All are people with brain illnesses. All deserve the right to receive medically necessary treatment. No exceptions. 

If you believe in equal rights for people with brain illnesses, please consider joining the National Shattering Silence Coalition. NSSC speaks out about federal, state and local policies that impact adults and children living with serious brain disorders commonly referred to as “serious mental illness” and advocates for change.