Psychotic Spectrum Disorders: A Conversation with Dr. Jane Tillman

“Psychotic” is a term that gets tossed around a lot in the culture. How would you frame it, as a clinician?

To start, psychosis represents a spectrum of disorders with many different etiologies or origins. People are most familiar with the term schizophrenia, but schizophrenia is probably going to turn out to be an umbrella diagnosis for many different conditions. People can be psychotic for all kinds of reasons, in the wake of substance abuse — with hallucinogens, for example— or because of schizophrenia. People who are bipolar can become psychotic, and so can people with various degenerative disorders.  The interaction between biological and genetic vulnerabilities with family and cultural factors is known to be complex.    At the Austen Riggs Center we appreciate the complexity of the etiology and treatment of psychosis, providing an integrative treatment approach using psychotherapy, family therapy, and medication along with intensive social engagement through the Therapeutic Community Program.

 What are the chief symptoms?

The symptoms most people are familiar with are what we call positive symptoms: hallucinations, delusions, paranoid beliefs, unusual behavioral or mood manifestations. Those are often treated acutely with medications and patients respond well to that.

Once you’ve treated the positive symptoms, people can enter what’s called the negative phase of a psychotic disorder: lack of motivation, lack of direction, flatness. There’s a quality of just being slowed down, and a withdrawal or social isolation. This can be debilitating.   It is also much harder to identify and treat. Everyone is familiar with the worst-case psychotic disorder, which is the disheveled person in the street who makes everyone anxious. That’s the more obvious, positive symptom.

People in the negative phase don’t look  so disorganized because they’re not having hallucinations or delusions, but they can be very isolated and shut down. They often don’t really know what they want to do. They may feel lost and ashamed. They’ve gotten help from medication, but they have a whole other road ahead of them. How are they going to pick up the pieces of their lives, go on and adapt?

One feature of these disorders is tremendous denial that a person is troubled, or needs treatment. It can be very hard to treat someone who other people think is impaired when that person doesn’t think so. Typically, you see problems with family members, problems in employment. These individuals see themselves in the world quite differently, and often aren’t interested in receiving any treatment. This creates a lot of frustration in attempting to offer help.

 

Let’s take a step back for a moment. What does psychotic mean in the first place?

For a lay-person, it means an altered sense of reality, a lack of shared reality with other people. Of course, we all have our own slant on reality, but hopefully we have enough touch points or shared points where we can have what we call a consensual reality.

 What’s a test you use to identify consensual reality?

When someone is in treatment you are looking to see if there is some acknowledgment of the trouble they have in their lives. A patient who has been arrested by the police, taken to jail, may say, “None of this ever happened.” They just hit someone yesterday, and you can point to documentation. They’ll say, “It’s a lie.”  This disagreement about fundamental shared experience is difficult for the patient, their family, and for those providing treatment.

 Is violence often a component?

 It can be, but not often. You hear about violence in the news a lot and this contributes to the stigma that comes with psychotic disorders and schizophrenia. But only a minority of psychotic individuals is violent. That’s one of the great misconceptions that may keep people from admitting their trouble. The label “psychotic” segregates these individuals from the rest of humanity. People don’t want to be segregated and written off. And this is a population that is vulnerable to segregation, because they commonly misread social cues and think other people are trying to harm them. It can happen--though it’s rare--that patients become aggressive out of the fear of being harmed by others.

 In the minority of cases where there is violence, that’s usually where it starts? 

 There may be an idea that someone is trying to hurt them, out of fear, or suspicion, paranoia — a delusion that someone is trying to attack. Also, in some psychotic episodes associated with bipolar disorder, people get revved up to the point that their judgment is clouded.

What do you find most compelling about working with people suffering from psychosis?

 It’s a great question because I love working with these patients even though it’s heartbreaking sometimes. These are human beings at risk of becoming society’s throwaways. They’re often shuffled from one drug trial or one symptom management situation to another. And mental health professionals struggle to treat these people, because they can make you intensely uncomfortable. Patients with symptoms of psychosis can be oppositional and very negativistic.  Imagine how painful it might feel to be isolated in a world of private belief without understanding others or feeling understood by them. In therapy, there may be long silences as patients struggle to put difficult thoughts and feelings into words. For most people there’s a longing for dignity and a wish to be respected. Patients want to find a place where they don’t feel exposed, ashamed, and humiliated. And often, patients are just grief stricken, asking, “Why me?” Often, on the surface, there may be delusions of grandeur, feelings of being omnipotent, of knowing better than everyone. But when that is stripped away, there’s a profound grief. We have many patients who are insightful and say ‘I would rather be crazy than face the sadness I have to face in my life,’ with so many relationships lost, so many opportunities lost, and people who think their future is lost. This is why it’s vital to get people into treatment as early as possible.

One source of dignity is work, but that must be challenging with people with symptoms of psychosis.

Yes, sadly, it is. Concentration and attention become very difficult. Certainly, if you have the negative symptoms, you’re not likely to be motivated. Really it’s a long, long process to get people rehabilitated to the point that they can consistently work in a job.  It is quite demoralizing to be disabled by a serious illness. This frequently leads to t shame and humiliation.  Often people with psychosis are dependent on their families for ongoing financial and social support.

 There also can be a lot of family strife about what is expected in return for that support. Families may feel angry because they see the symptoms of the disease — out of control drinking, say — as simply bad behavior. When parents find out they have a child with schizophrenia, you have to do a lot of education, and help them manage their grief--particularly when it looks like it’s going to be impairing over the long-term.

 What portion of the psychotic population will fall into this category of long-term struggle?

 About a third of people diagnosed with psychosis will have one episode, recover, and that’s it. Another third will have an episode, recover fairly well, though maybe not to baseline, and have recurrent episodes. So you’ll see a pattern of remitting and relapsing over the course of their life. Another third of people will have a break, and never really recover. They may be paranoid or delusional in a very chronic or ongoing way. What I’ve seen is that when you tell people they have schizophrenia, they all assume they’re in that last category. But a lot of people with schizophrenia do recover, and go on to lead productive and satisfying lives.

 What do people suffering psychosis look like and talk like? In other words, how would they appear to a clinician or family member?

One sign would be serious disruption in social relationships, family relationships and a loss of  overall functioning such as an inability to work, go to school, volunteer, really to function in the world..

We often encounter patients who have serious substance abuse symptoms, perhaps in an effort to treat their own symptoms via alcohol or other substances The negative symptoms of schizophrenia likely have some relation to depression and patients following an acute psychotic episode often feel extremely depressed and defeated.

Many antipsychotic medications have significant weight gain as a side-effect, and that’s one reason why the mortality rate is higher in this population. Smoking is also prevalent in patients with psychotic illnesses, contributing to ongoing health concerns..

 What’s it like on the inside? What do people psychotic people feel like and think like?

 I think people can feel extremely lonely. People with psychotic disorders may push people away with odd, angry, scary behavior. And the patients themselves know something is not right and so they may avoid other people. Patients often have the feeling that no one understands them, because the reality of the psychotic person is often quite at odds with the perceptions of the people around them. So they can become angry, puzzled, and frightened by that.

 Does it manifest physically?

I think people can be either cut off from their bodies, or very frightened that they don’t look right. They might fear they’re being stared at. They sometimes have odd ideas about illnesses,  or bodily delusions.

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