How to Help Someone Come to Terms with their Illness

Most people, myself included when my brother first developed schizophrenia 40 years ago, experience anosognosia as denial or worse. By worse, I mean misidentifying this brain symptom as a character flaw. Anosognosia is a flaw in brain structure and function, not a flaw in character. It is a neurocognitive symptom common in schizophrenia and related disorders that renders patients unaware that they have an illness. Anosognosia affects approximately 50 percent of such patients and is the top predictor of nonadherence to medication.

We don't know the exact causes, just like we don't know the exact causes of schizophrenia and related disorders. Like these diagnoses, anosognosia is likely a consequence of genetic and environmental interactions, though in some instances environmental insults to the developing brain alone can cause both these disorders and anosognosia. We know in neurological patients that lesions to the nondominant parietal lobes and frontal lobes often result in anosognosia.

Anosognosia manifests behaviorally in refusal of treatment or dropping out of treatment once it has started. Cognitively, it is manifested by an inability to see or comprehend that one has a mental illness. As I said earlier, anosognosia is often confused with denial or a shortcoming in someone’s character. Nothing could be further from the truth. Much more often than not, when someone with schizophrenia and related disorders refuses treatment and says, “I am not sick, I don't need help!” what you’re seeing and hearing is anosognosia.

No. Denial is psychological defensiveness. Anosognosia is a symptom of a brain disorder caused by brain damage and/or dysfunction. Unlike denial, anosognosia typically lasts for years and even decades. That said, there are ways to help people accept treatment that doesn't require their understanding that they need it! That fact is at the core of the LEAP (Listen, Empathize, Agree, Partner) approach to communication.

My brother Henry and I were very close our whole lives until he developed schizophrenia. It was not the schizophrenia that created relationship tension and estrangement; it was the way I was talking to him!

Helping my brother underscored the importance of refraining from trying to convince and educate, and instead focusing on listening and being empathic without judgment. I learned to W.A.I.T. in my relationship with Henry. When he got angry with me after I told him he had an illness and needed treatment, I used to persist and try to convince him. I did that for seven years! Nothing was gained and much was lost. Then I started to ask myself, when I saw him get angry, frustrated, or even depressed after telling him what I thought he needed to do, Why Am I Talking (WAIT)?!

I learned the hard way the priceless value of listening to what he wanted and believed his needs to be, no matter how irrational I thought they were. That led to his being interested in my perspective – which led to his accepting treatment for an illness he was sure he didn't have (using LEAP)!

The prevalence of anosognosia is approximately 50 percent. The prognosis is poor unless the person can engage in a relationship(s) characterized by respectful and nonjudgmental communication. The research, my personal experience, and 40 years of clinical work all agree that these kinds of relationships lead to acceptance of treatment. They do not involve education or psychoeducation; they involve listening and empathizing actively without telling the person their beliefs are wrong. Only after the person feels heard do they become interested in what I have to say.

Listen – Empathize – Agree – Partner (LEAP) is an evidence-based communication skill set that is partly based on client-centered therapy, cognitive therapy and Motivational Interviewing. LEAP is designed to create relationships, whether with a therapist, family member, friend, or even a police officer or judge, that leads to engagement in treatment.

Free videos that teach LEAP can be found at LEAPinstitute.org.

LEAP is counter-intuitive in that the focus is not to help someone accept that they have an illness. Because anosognosia is at play and tends to not improve with treatment, the focus of LEAP is behavior change ("Okay, I will take the medicine even though I don't need it”), not attitude change ("Okay, I see now, I have schizophrenia and need treatment”). You can see how this is not intuitive.

LEAP is all about building trust and mutual respect. Therefore, when you suggest someone consider treatment for sleep, their acceptance is for no specific reason other than a strong relationship and that you have a genuine concern for their wellbeing.

Typically, one to six months. In some cases, where the person is very angry because of involuntary hospitalization and paranoid delusions, for example, I have seen it take several years. This is a marathon, not a sprint. LEAP often involves repairing broken relationships and winning back trust can take time. However, the end result is well worth the patience and persistence!

Stop trying to educate. Instead, listen respectfully without judgment and look for feelings you can empathize with. Then, and only then, ask, “Can I make a suggestion?” When you get a yes, use one of the LEAP tools: Apologize, Acknowledge your fallibility, and Agree to disagree (the three A’s to giving your opinion). What might that sound like?

“Thanks for hearing me out. I want to apologize because my idea will likely upset you and I could be wrong. I would like you to try the medication just for a couple of months. I hope we don't have to argue about this because I respect your truth: that you don't need medication.”

See how this is counterintuitive! The research on LEAP and my experience indicate it works far more often than not.

Finally, if trying to convince someone they have a psychiatric illness and need help hasn't worked for many months or years, why keep doing the same thing expecting a different result (Einstein’s definition of insanity)?! Maybe it’s time to try something very different—something like LEAP.