A Common Problem

“I am not sick! I don’t need help!” Henry Amador, as said to the author.

“My brother is so ill. He’s refused to take the medication. We’ve tried to talk him into it,” said April Callahan, sister of Russell Weston, who is charged with having shot two guards at the U.S. Capitol. “He just wouldn’t do it,” added his mother, Arbah Weston. “What are we going to do with a 41 year old man? You can’t throw him in the car.” AP wire July 26, 1998.

“There was [this] sick person [who] broke into David Letterman's house. That was her illness. She had an aversion to treatment and to admitting that she had a problem.” Anna-Lisa Johanson, as told to the author.

“My mother wanted us to camp out on his land and convince him to get help. As far as he was concerned we had the problem, not him.” David Kaczynski, brother of the confessed “Unabomber” Ted Kaczynski, as told to the author.


“After Jeff’s last manic episode I thought he’d finally realized he needed to stay on the medicine. But last week he stopped taking his lithium again. He says he’s better now and doesn’t need it anymore!” Julia, as told to the author.

Nearly everyone is aware of the problem, if only from the newspaper headlines: Many people with mental illness are in denial that they are ill and, therefore, refuse treatment. Those of us who are related to such persons reluctantly see ourselves and our loved ones reflected in those headlines. Julia’s predicament, which was never the focus of any news story, highlights a problem encountered by millions of U.S. families whose names never appear in the media. It is, in fact, a far more common scenario than those involving violence and/or suicide, which are, of course, the ones we read about. But just like the more infamous examples cited above, Julia’s loved one does not think he is ill and does not want to take medication. His denial and refusal may not lead to infamy, but they will almost certainly lead to worsening illness, lost opportunities, and ruined relationships with loved ones.

 
Many people with bipolar disorder and schizophrenia think of their illness as something that comes and goes. For a short time, Jeff acknowledged he had an illness and took the medication prescribed for it. But after things got better, he decided he didn’t need to keep taking the lithium. For Jeff, lithium was medicine to treat his mental illness in the same way that antibiotics are medicines for an infection. When the bottle is empty, you are cured. In reality, the better comparison is that lithium is for manic depression what insulin is for diabetes, a chemical that needs to be taken every day to prevent a relapse or even death. Because both bipolar disorder and schizophrenia are so lethal (about 10% to 15% of all suffers die from the illness via suicide), this analogy is particularly apt.
Even though Jeff took his medication only sporadically, he was still a step ahead of the game, because many people with serious mental illness 1- have never acknowledged that they’re ill and refuse to take medication even once.
David Kaczynski, the brother of Theodore Kaczynski, the “Unabomber,” told me that even though his brother had terrorized the nation for two decades, the Kaczynski family had received countless letters expressing support, understanding, and condolences from people who were related to someone with a serious mental illness. Like David and his mother, they had experienced the helplessness and heartache associated with caring for someone who was in denial about having a mental illness. In fact, I was one of those letter writers. Like the others, I saw my own situation reflected in that of the Kaczynski family. I’ve just been luckier because my brother Henry, like the overwhelming majority of people with these illnesses, was never violent.
 
1- Many mental disorders can be very serious (e.g., depression, anxiety, personality disorders and others). However, for the sake of brevity, I will use the term “serious mental illnesses” to refer specifically to psychotic illnesses including schizophrenia, schizoaffective disorder, bipolar disorder, and others.

 
 
Far more common than the tragedies that make the headlines are those that test the bonds of family and the moral resolve of the therapists who are entrusted with the care of our loved ones. When once again a bottle of medication is found in the trash or stuffed under a mattress, when we are told to mind our own business, that we are the only one who has a problem, when yet another doctor’s appointment is missed, we all come one step closer to throwing our hands up in despair. Sometimes, whether or not we walk away, our loved ones 2- do. They disappear for hours, days, weeks, and even years. My brother Henry was in the habit of disappearing for days and even hitch-hiking cross country. Some make the headlines anonymously when they join the ranks of the homeless or incarcerated. That used to be my biggest fear.
 
There are approximately six million people in the United States with serious mental illnesses, and the results of recent studies indicate unequivocally that about 50% of all people with these disorders don’t believe they’re ill and refuse to take the medications that have been prescribed for them. That amounts to three million seriously mentally ill Americans who don’t realize they’re ill. You probably already had some idea of how widespread these illnesses are, but did you ever stop and think about how many family members there are? If we count only the parents of these individuals, there are twice that number of family members! Add just one sibling or offspring, and the number becomes truly staggering. Now here’s the real headline: More than ten million Americans have a close relative with mental illness who is in denial and refusing treatment.

Most studies find that about one half of the people with serious mental illness don’t take their medication. The most common reason is poor insight into illness.


 

In the past fifteen years, there has been an explosion of research on the problem of poor insight. Among the earlier studies during this period was one conducted by my colleagues and I. We studied more than 400 patients with psychotic disorders from all over the United States. This “field trial” was conducted as part of our participation in the revision of the Diagnostic and Statistical Manual for Mental Disorders (DSM) conducted by the American Psychiatric Association. We measured a wide range of symptoms, including insight into various aspects of the illness and treatment. What we hoped to learn was how frequently people with a mental disorder did not realize they were ill. Our results showed that nearly 60% of the patients with schizophrenia, about 25% of those with schizoaffective disorder, and nearly 50% of subjects with manic depression, were unaware of being ill. This main finding has been replicated more than one hundred times in the research literature and is so widely accepted in the field nowadays that, as of the year 2000, the standard diagnostic manual used by all mental health professionals in the U.S. states that, “A majority of individuals with schizophrenia have poor insight into the fact that they have a psychotic illness….” Page, 304 (Diagnostic and Statistical Manual for Mental Disorders, IV-TR, American Psychiatric Association Press, 2000).

 
 
2- Since this book is written for both lay and professional readers who are trying to help someone with a serious mental illness, there are many terms I could use to refer to the person being helped (e.g., patient, consumer, family member, loved one, etc.). To avoid cumbersome language I will mostly use the terms “loved one,” “family member,” or “relative,” from this point forward. Readers who are mental health care providers should substitute “patient,” “client,” or “consumer” (whatever the preference), for the familial reference.

 
 
In other words, when the patients enrolled in our study were asked whether they had any mental, psychiatric, or emotional problems, about half answered “no.” Usually the “no” was emphatic and followed by sometimes bizarre explanations as to why they were inpatients on a psychiatric ward. Explanations ranged from “because my parents brought me here” to stranger beliefs such as, “I’m just here for a general physical.” Whereas the majority of patients with depression and anxiety disorders actively seek treatment because they feel bad and want help, these individuals, by contrast, were unaware of having a serious mental illness. Unlike people with depression and anxiety, they never complained about “symptoms” because they didn’t have any. Indeed, their main complaint was usually feeling victimized by their family, friends, and doctors who were pressuring them to accept treatment for an illness they didn’t have!
In addition, a significant percentage of those we studied were also unaware of the various signs of the illness they “suffered” from, despite the fact that everyone around them could readily recognize the symptoms (e.g., thought disorder, mania, hallucinations, etc.). The pattern of pervasive unawareness of symptoms shown in the figure below was also found in all the other psychotic disorder patients we studied (except those with psychotic depression). This was the first time anyone had looked at this issue and so we were surprised to learn that the problems with illness awareness did not stop at denial of a diagnosis. The unawareness we were documenting was severe and pervasive (i.e., patients were unaware of their diagnosis and unable to see even the most obvious signs and symptoms of their illness).
 
Percent of patients with schizophrenia who were unaware of their signs and symptoms of illness.

Source: Amador, Andreasen, Yale & Gorman, Archives of General Psychiatry, 1994

Halluc. = Hallucinations; Del. = Delusions; Tht. Dis.= Thought Disorder; F.affect = Flat Affect; Anhed. = Anhedonia (i.e, loss of pleasure); and Asocial. = Asociality.
 
To illustrate just how extreme the unawareness can be, let’s look at Matt, who is a former patient of mine. As you read Matt’s story, however, I want you to keep in mind that, in the chapters that follow, you’ll also be learning how I was able to help him develop insight into some key aspects of the illness that ultimately enabled him to accept medication and to become an active participant in the treatment that was being offered. Not surprisingly, as he was able to do that, the endless stream of conflicts with his family over his refusal to stay in treatment also came to an end.
 
Matt
 
At the time I met him, Matt was twenty-six-years-old, single, and living with his parents. He had been diagnosed with schizoaffective disorder six years before, when he first began to experience grandiose and paranoid delusions (thinking he was a special messenger from God and knew the President of the U.S.A. personally, and worrying that the CIA was trying to kill him). He had disorganized speech and bizarre behaviors (wearing broken earphones that had been wrapped in aluminum foil). He was hearing voices. Although Matt was remarkably unconcerned about his obvious signs of mental illness, they gravely troubled his family, friends, and even his neighbors, who had to endure his loud speeches. He had been hospitalized on four occasions since he first became ill.
 
At the time of the interview you are about to read, Matt had voluntarily signed himself into the Schizophrenia Research Ward at Columbia University in New York City, where I was the Science Director. He came to us from a city hospital where he had been taken involuntarily and admitted to the psychiatric ward from the emergency room because his mother had called 911. Although the exact length of time is uncertain, Matt had stopped taking his medications at least six weeks before his mother’s 911 call. That night, the paranoia that had been brewing for days boiled over. Matt began to scream at his mother, accusing her of interfering with his mission from God, which, he believed, was to be His special messenger to the President. His speech was disorganized. He was hearing voices. For several days he had been frantically writing letters to the President and trying to place phone calls to the White House. More frightening to his mother, however, he was hearing God's voice telling him to lock her in the closet!
 
By the time he arrived at Columbia, Matt had been receiving medication for one month. When I interviewed him, nearly all of his symptoms, except the delusions, had shown significant improvement. Although he still believed he was God’s messenger and that the CIA was trying to kill him, he felt less urgency about these ideas and was less worried about his safety. In fact, despite his obviously poor insight into the illness, he was about to be discharged to his parents’ home with a referral to an outpatient treatment program. I started the interview by asking Matt to tell me how he had come to be in the hospital.
 
“I think it was... I don't know the exact terms. It wasn't identified to me as of yet. I think they brought me here for a general physical. They wanted to know was I drinking, had I been smoking. I told the police that there wasn't any drinking, no smoking. It was just a mild argument we had and I believe that my mother had more seniority over what was going on. So they took me to the clinic to have the doctor make the determination of how well off I am.”
 
Although Matt’s speech was somewhat disorganized and a touch idiosyncratic, I caught the gist of what he was trying to tell me and asked, “So, when you were having an argument with your mother someone called the police.” He nodded. “Was it your mother?”
 

“I think so.”
“Why did your mother call the police?”
“I don’t know. She wanted me to go to the hospital.”
“Why did your mother want you to come to the hospital?”
“She said she didn't really want me to go to the hospital in the event that an argument like that took place, because we were discussing my use of the telephone.”
“I am a little confused by what you just said.” I admitted “Why did she want you to go to a hospital?”
“We were arguing and I think she thought I was sick and needed to be checked out.”
“Were you sick?”
“No. We were just arguing.”
“So the police took you to the hospital.”
“That’s right.”
“Why did the people at the hospital admit you?”
“They didn't say. A real friendly guy was there. He said, ‘Don't worry you’re going to be here for a while and I'd like you to get your thoughts together,’ and I’ve been in the hospital ever since.”
“Yes. But that was in the emergency room. What kind of a ward did you go to?”
“I went to a psychiatric ward upstairs. They removed me of my clothes and they told me I was going to stay there for a while.”
“But why a psychiatric ward?”
“I think that's all they have available now because of the heavy drug and alcohol use. They may not be receiving aid for a general check-up clinic.”
“Matt, now I am confused. Are you saying the doctors at the City hospital admitted you to a psychiatric ward for a general physical?”

“That’s right,” he answered, as if there were nothing unusual or upsetting about his perception of his circumstance.
“So, do you see yourself as someone who didn't need to be in a psychiatric ward?” I paused and then added, “Do you see yourself as someone without psychiatric or emotional problems of any sort?”
“That's right. But they put me through the emotional tests because of the two-party system. They asked me to cooperate. So I've been pretty much cooperating. Some of it is against my will but I can cooperate.”
“You didn’t want to stay. Is that right?”
“Right.”
“Why did you stay?”
“I had to because of the judge. He committed me for a month.”
“But after the month was up you decided to come here, to the Schizophrenia Research Ward. Yes?”
“Right.”
“But you feel there is nothing wrong with you?”
“That’s right. My mother wanted me to come, but there’s nothing wrong with me.”
 
To say that Matt had poor insight into his illness is an understatement. Nor does it do justice to the strangeness of the beliefs he had about what was happening to him. Matt believed that police officers had restrained him and taken him to the hospital at the request of his mother simply because she had more seniority than he. He also believed that an emergency room physician had admitted him to a psychiatric ward for one month simply to get a “general physical.” And what can we make of the blasé attitude he had while describing these terrible injustices? Handcuffed by the police, taken to a hospital and incarcerated against his will for a month and he didn’t threaten lawsuits or scream bloody murder? Many patients with these illnesses do exactly that, while others have the remarkable lack of distress that Matt showed.
 
I should make clear the fact that Matt had an average IQ. This was not an issue of low intelligence. So then, what is going on here? Is it that Matt was embarrassed by his mental illness and didn’t want to reveal the truth to me? That’s possible, but if such were the case, wouldn’t a less bizarre explanation have been more convincing? More important, however, Matt knew that I was quite well aware of all the details related to his hospitalization. I was, after all, the doctor assigned to his care!
 
As you may already have guessed, Matt was also unaware that the voices he heard were unusual. He accepted them as if they were nothing out of the ordinary and certainly nothing to be concerned about.
 

Imagine if you suddenly started hearing voices when no one was in the room. What would you do? Very likely you would be worried, and if the hallucinations recurred, you would rush to a doctor. That’s what most people would do. I know. I have worked in neurological clinics with such people. Sometimes hallucinations are among the first symptoms of a brain tumor. But why do some people worry when they hallucinate and others don’t? Is it simply denial? Is it that some people are more able to accept that they have problems while others are too frightened, proud, or stubborn? Or is there some other explanation?

 
 

At this level, poor insight is clearly another symptom of the disorder, and has nothing to do with being defensive or stubborn.

 
 
In fact, Matt was not in denial. Instead, our research and that of other clinical scientists tells us that Matt had at least one more symptom that had not been helped by the medicine he was given. His bizarre explanations for why he was in a psychiatric hospital (for a general physical and because all the other wards were filled with drug-addicted patients) and his failure to realize that he was ill and could benefit from medicine, were not stemming from denial or pridefulness. Nor did they have anything to do with being defensive or stubborn. Rather, his poor insight into having an illness and into the benefits of treatment was clearly another symptom of the disorder itself. Indeed, the research you will read about in Chapter 3 explains that this type of poor insight is more readily understood as one of the neurocognitive deficits, or symptoms of a brain dysfunction, that are commonly caused by these disorders. This is very important information because only when you understand the causes of poor insight can you be effective at dealing with the refusal to take medication that it creates.