I’m Not Sick, I Don’t Need Help: Dr. Xavier Amador (Transcript)

What is it? It’s really a couple of symptoms that we see most often: false perceptions, hallucinations (hearing things, hearing voices, seeing things that aren’t there), and having delusions. I’m not talking about political opinions; I’m talking about fixed false beliefs. Sometimes they’re bizarre, like “there’s an alien implant in my brain,” or sometimes they’re not so bizarre, such as “My wife is having an affair on me.”

For many years, I worked as a clinician trying to help people with schizophrenia, bipolar, and related disorders. I heard over and over again, “I’m not sick, I don’t need your help; you’re the crazy one, not me.” As it turns out, about half of all people with these illnesses do not take medications that have, from the view of other people, helped them. What is this problem? What are the lessons that we learned? When I say “we,” I’m talking now about my colleagues at Columbia University, where I worked for two decades doing research.

Personal Insights and Research Discoveries

What we uncovered were two main lessons I want to share with you today. First, it’s typically not denial when someone says, “I’m not sick,” for months, years, and even decades. And second, the way we were speaking to our patients was making things worse, far worse. So, let me start at the beginning. The beginning really starts with my brother, Henry, who developed schizophrenia back when I was 21 years old. This is a picture of Henry and myself after we had immigrated from Cuba, on the heels of the Cuban Revolution. That’s me driving the car and Henry looking through the window.

Henry was much more than a brother; he was a father figure. He was, as I said at his eulogy, “Henry was my rock.” He truly was a mature, responsible person. Now, why am I telling you this? Because the story of this research is all about relationships and what happens between family members and healthcare professionals who are trying to help people with these serious mental illnesses. Twenty years after this picture was taken, my brother developed schizophrenia. He heard voices, the voice of the devil, out loud, just like you can hear my voice now.

He didn’t think, “I have a problem; I’m going to go see a doctor.” He thought it was the devil. He had delusions. Our mother was in cahoots with the devil. Her eyes were laser beams. This is where it got a little bit bizarre. She was actually cutting him, lacerating him. He tried to show me the wounds. Of course, there were no wounds. For a week, I argued with my brother. I begged him to go to the hospital. At first, I gently explained to him, “Henry, you’re not thinking straight. Something’s clearly wrong.”

Overcoming Challenges and Changing Approaches

For a while, I thought he might be on drugs. That wasn’t the issue. After a week of gentle persuasion, it turned into harsh confrontation, accusing him of being immature, irresponsible, not caring about our poor mother. “Hasn’t she been through enough?” trying to make him feel guilty. I got him into the hospital. Like many, many families, millions, at least three and a half, four million families in America have been through this experience. I had to call the police.

He was involuntarily admitted to the hospital. Over the course of a month, and don’t faint, but back then, in the 1980s, people could stay in the hospital for that long. He got better. Antipsychotic medications eliminated the hallucinations, eliminated the delusions. He promised he would take his medication. I came home. Where did I find it? In the trash can.

What followed was seven years of my brother and I butting heads. Me telling him, “You’re ill, you need help, please get help.” Him saying, “No, I’m not, nothing’s wrong with me.” And what did our relationship look like? Like this: Him running away from me and running away from all the people who were trying to help him. Not much of a relationship. He was homeless for a while. He was picked up by the police a lot, never broke laws, thankfully.

During that same time, I was being trained as a clinical psychologist, and I picked up some gems, and probably the most important tool I picked up was not from a psychiatrist or psychologist, it was from Albert Einstein. It was the definition of insanity: doing the same thing over and over again, expecting a different result.

Breakthroughs and New Understanding

For seven years, while he was running away from me, he was being involuntarily admitted. Almost 30 hospitalizations. While I argued with him, “Henry, you’re sick, you need help, please get help,” over and over again, expecting a different result. I called my brother, we had a conversation, we got together, I promised him I would never again tell him he was mentally ill. This is after seven years of trying to convince him.

And I also did some other things I’m going to tell you about that are based on the research my colleagues and I have done. Our relationship changed dramatically, and with that, he accepted treatment.

And in fact, in the next 18 years, our relationship looked like this. This is a picture taken out here. That’s my brother on the right, that’s me with a Jerry Seinfeld haircut. The way it looked back then. Now, that’s not a delusion, me thinking that was cool, that was just style. Henry, look at the way he’s holding me. I actually can’t look at this picture myself anymore without getting very emotional. But if you can look at the way he’s holding me and smiling at me, sometimes a picture truly is worth a thousand words.

The love was back, the trust and respect were back. And importantly, he was taking medication reliably for 18 years, one hospitalization truly voluntary. He checked himself in. He called me and said, “I’m going to the hospital.” So, this is the foundation of a lot of insights of my own. It led to a lot of research that our group did at Columbia University and people around the world followed up on. It’s now in our Diagnostic Manual for Mental Disorders. I was asked to submit the text on the latest edition of this, which came out in 2013.

Anosognosia and Its Implications

So, I’m going to summarize some research in just one minute. What do we know? We know that unawareness of illness, notice we don’t use the word denial, is typically a symptom of the disorder, like a hallucination. And it’s very much like what we see in neurological disorders. If you’ve ever worked with neurological patients, as I have, you sometimes see people who are paralyzed and they don’t know it. That symptom is called anosognosia. It’s a tongue twister. I didn’t come up with it. It was a French neurologist in 1919, Babinski.

So, if it’s anosognosia, that already starts to suggest we should be talking to people differently about their illness, not trying to educate them. “I wouldn’t tell someone to stop hallucinating. Just stop being delusional. Stop hallucinating.” Because it’s not under their control. But that’s what I had been doing for many years with not only my brother, but many patients. This symptom, and again, this is in our psychiatric manual for mental disorders, even though it’s still not widely known in our field, is the most common predictor of who will not take medication.

Fifty to seventy-five percent of people with these disorders do not take the medications that reduce those symptoms I’ve been telling you about, the psychotic symptoms. It predicts all kinds of problems, poor course of illness, involuntary hospitalizations like my brother had, and even aggression and violence. And of course, we know some of the stories that have hit the headlines in some of the cases I’ve worked on, like Theodore Kaczynski, who was diagnosed with paranoid schizophrenia. Never understood he was ill.

A New Approach to Communication

So, I’m talking about this, but what does it feel like to have anosognosia? For this, I need a volunteer, someone who is married. You don’t have to be happily married, just married. Could you raise your hand if you’re married? Sir, can I ask you to help me right there in the yellow shirt? What is your first name, sir? Richard.

Richard, I’m actually uncomfortable doing this. This is a strange thing I’ve been asked to do by your family. How long have you been married to your wife? Forty-six years. Forty-six years. What’s her first name? Eleanor. Eleanor. And where is she? In New York City. I’ve been asked to do an intervention with you. You’re not actually married to Eleanor. I have restraining orders backstage. I can bring you back here and show them to you. Eleanor and her husband and family have been stalked by you for at least 20 years, I’m aware of.

If I showed you those restraining orders, would that help you to understand? I don’t think so. You don’t think so? Shh, no laughter, please. Would they convince you? No. Okay. When you leave here, when you go home, where will you go? To my house.

To his house. Is that the house Eleanor lives in? When she’s here in Orient, yes. Yeah. Well, the neighbors see you, they call the police, and you end up in front of a judge. It’s called a diversion court. And the judge says, “Richard, I have really almost 10 years of paperwork here on you, on your rap sheet. I understand you have a mental illness. You believe you’re married to this woman, Eleanor. You violated the restraining order again by going to her home. Now I’m the judge. I’m going to give you a choice, Richard.”

A Judge’s Decision and a New Path

“You can go to the hospital, and we’ll adjourn your case of trespassing. And by the way, let me ask you something, Richard. When you went to the house and the police showed up and told you you weren’t married to Eleanor, this was not your house, do you think you would resist going with them?” In all likelihood, Richard might resist, reflecting the complexity of dealing with mental illness in legal contexts. So, I’m the judge again. “So, Richard, I have also a charge of resisting arrest here.

So, I’m giving you a choice. You can go to the hospital, we’ve arranged something here close by, and get some psychiatric help, and in six months we’ll review and maybe dismiss these charges. Or you can go back to jail, and we’ll have an arraignment on Monday morning. You’ll spend the weekend in jail. What would you like to do? What do you think you’ll do?” “Hospital,” Richard decides, showing a glimmer of hope towards recovery.

“Wonderful choice. So, you go to the hospital. They relieve you of your clothing. They put your personals in a plastic bag. Then they give your clothing back. They take your vital signs. They offer you medication. This one here is for the delusions that you have. This one here is for anxiety, and this one here is for side effects,” the nurse explains, offering Richard a path towards stability. The nurse gives you the cup. “What do you do with it?” “I would take the medication,” Richard responds, indicating a willingness to comply with the treatment plan. “Okay. How long would you take that medication? If you were there for two weeks, would you take it every day?” “I would,” Richard affirms, suggesting a commitment to his recovery.

Challenges and Realizations

“Wonderful. So then they can write a great report to the judge. ‘This patient is adhering to treatment.’ Let’s fast forward now, because they don’t let you go back to your home. They want to send you to a group home to be with other mentally ill people. Do you go?” “Probably not,” Richard admits, hinting at the challenges of acceptance and adjustment. “Probably not? Where do you go instead?”

“Probably, if I don’t have a home to go to, I’d probably live in my car.” Ten years, five years go by. “You never see Eleanor again. You never see your home again. Do you think you’d come to understand you are not married to her, that you have a mental illness?” “I believe I would,” Richard concedes, reflecting a potential shift in understanding over time. “In five years, really? That’s all it would take? Did you propose marriage?” “Yes.”

“That didn’t happen? You really think in five years you could come to believe that the memory that you’re having right now of that proposal never happened? Or the wedding? Do you think you could be really convinced that all of that was just a dream?” “Probably not,” Richard acknowledges, highlighting the deep-rooted nature of delusional beliefs.

Understanding Anosognosia

“Thank you for your help. Can we thank Richard for helping me? Real quickly, any emotions that you had as we were doing this? I know it’s a role play. Fleeting emotions. Just name one.” “Resistance,” Richard shares, providing insight into the emotional experience of those facing mental health challenges. “Resistance. How about any anger or fear?”

“Yes. Yes,” he adds, further underscoring the complexity of emotions involved. “Thank you again for your help. Let’s thank him again. And please, call Eleanor when this is over,” the speaker concludes, illustrating the persistent and concrete belief in the delusion. “That’s what it’s like. This is a fixed, firm belief. It’s concrete. It’s solid. It’s in Richard’s bones. He knows he’s married to Eleanor. And that’s what it’s like for millions of Americans with these serious mental illnesses.”

So, when dealing with somebody who has anosognosia for mental illness, not denial of mental illness, the conventional wisdom of “the doctor knows best,” or the family knows best, does not work. There’s no collaboration. “Can I expect Richard to be grateful? Are you grateful for my advice?” “No.” “Receptive?” “No.” Richard had to go underground, like my brother did, and accept treatment for a month, and maybe longer, just to get his freedom back. This is what happens, again, to millions of Americans with these illnesses. Adherence refers to medication adherence, medication compliance. Like again, 50% of patients, he’s very unlikely to take medication. What I can expect, what the research shows us, is that we will get somebody who is fearful, angry, suspicious, demoralized, lonely, and who will not take the medication.

A New Approach

So, how do I deal with them? Well, the approach is, believe it or not, I told you earlier that this is about relationships. We have to create respectful, non-judgmental relationships. These, the research shows, result in acceptance of treatment. For an illness, the person doesn’t believe they have.

So if Richard comes to me five years from now, and he tells me his story, I would listen to it with respect and without judgment. “The L in LEAP stands for listening reflectively, again, with respect and without judgment.” So after he tells me his story, I would say, “So, you went to that TEDx talk, and they took away your wife, your home, everything? Did I understand you correctly?” Which would be very different than what he had been hearing, which is, “You know, Richard, we want you to calm down. We’ve got to keep you away from Eleanor.”

And what we’ve learned through doing a lot of research is that people with these illnesses feel relief. Now, this is not dishonest. I’m not pretending I believe. I’m simply reflecting back his experience. “I would empathize with Richard, strategically, especially with the emotions around the delusions. ‘It must be terrible to have this happen. How was it for you?’ ‘Well, I was resistant.’ ‘Were you angry?’ ‘Yes, I was angry.’ ‘You know what, Richard? I’d be angry, too.’ We work on those things we could agree on. It’s never going to be that Richard is not married to Eleanor. That’s a delusion. We’ve known that for 60 years. We don’t try to talk people out of their delusions. Well, we also don’t try to talk people out of their anosognosia, their unawareness of mental illness. We partner on what we can work on together.

There’s three other tools we use, but again, the focus is respectful, nonjudgmental communication. So, with my brother, ‘So, mom’s the devil and her eyes are laser beams, is that what you’re saying?’ ‘Yes.’ ‘Well, no wonder you’re so terrified of her. I would be, too, Henry, if this happened to me.’ Those are the kind of conversations I had with him. If he asked me, ‘Do you really believe this?’ If Richard asked me, ‘Do you really believe I’m sick?’ I might delay. We call it the three A’s: I apologize for my opinion, I acknowledge my fallibility, agree to disagree. What does that sound like? ‘Richard, I’ll answer the question if you want me to, but I want to apologize. I might upset you, and I could be wrong. I hope we don’t have to argue.’ When we give our opinion, we’re using those three tools.

And then we’re not afraid to apologize for things like previous confrontations, like I did with my brother. Apologize for things like an involuntary hospitalization that we were a part of. Sometimes people will say, ‘Why are you repeating everything I say?’ The research shows that you can apologize for that. ‘I’m sorry. I’m repeating everything. I just want to understand you. I wasn’t listening before. I kept telling you you were ill. I like to listen.’ So, it’s a very different approach. It’s not the medical model approach. It’s the motivational interviewing approach. It’s a whole other field of study.

Closure and Reflection

And I’ll end with some closure on the story of my brother. I lost sight of who my brother was in those seven years that we fought. He was a mature, kind, selfless person. He died being Henry Amador. He was safely on a city bus when he heard a woman behind him struggling with groceries. He got off the bus, got on the sidewalk, and was handing her groceries when someone who had lost control of their car ran him down. He saved that woman’s life. It was an act of kindness that he was engaged in when his life ended. He had a very good life for those 18 years. He had a girlfriend, he had work, and he had his relationships back, as that picture I showed you, I think, demonstrates best. So how we approach people who have these illnesses, who say, ‘I’m not sick,’ is vitally important. And the relationships we build are the key. Thank you.

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