Sweat is pouring down your forehead; your eyes are blurry from a headache. You turn to the side and vomit on the ground. A friend grabs you by the shoulder and says “You’re sick; you must have the flu or something. You better lie down while I call a doctor.” You respond, “What are you talking about, I’m not sick.” Is it possible to not know when you are ill? In fact it is and it is estimated that about half the people with schizophrenia have no idea that they have a serious disease. This phenomenon is a symptom called anosognosia that is at the bottom of treatment resistance with many mentally ill patients. This is completely different from the psychological process of denial, where a person is aware of the problem, but denies its importance or impact and won’t deal with it. Denial is common with substance abuse while anosognosia is often found in certain types of brain injuries and mental illness.
Those of us who provide treatment to people with mental illness know what a difficulty anosognosia can be. We imagine that somehow logic or facts will be our ally in explaining to an intelligent person the cause of their discomfort and the symptoms related to it. Not only are logic and facts useless, they can often become an issue that will divide a treatment professional from their patient.
The Story
Ray was a good guy. Born and raised in Ithaca, both of his parents worked at Cornell. The onset of his schizophrenia was during his second year of college and by the time he was thirty, he’d been hospitalized a dozen times. He had many of the positive symptoms, like hearing voices and having delusions, and had few of the negative symptoms that can isolate an individual. He was a public presence, a tall red head dressed with vest and scarf and always carrying an arm full of books. He would haunt the coffee shops and public spaces at the colleges during the day and nurse a beer at one of the local taverns in the evening. When given a chance he would strike up a conversation with someone sitting nearby. He’d try to break the ice with facts, “Did you know that you can sail from Ithaca to anywhere in the world? Cayuga lake links up with both the Hudson River and the Saint Lawrence through the Erie Canal.” This type of fact might lead to a discussion about boats, sailing, canals, rivers or travel, all of which Ray could talk about. But often as not the topic would go to Ray’s true interest, languages.
Ray claimed to speak at least seven languages and have working knowledge of several more. Beyond English his claims went unchallenged by anyone who spoke them. All of them happened to be ancient languages and no one else spoke them, except Ray and the native speakers whose voices he heard daily. They spoke in Carthigenian, Phonecian, Indochinese and at least four others which may or may not have existed. Ray was fortunate in that the voices he heard were different in tone from many of the voices other people with psychosis suffer. Many people who hear voices note that they are nasty and disparaging. For the most part, Ray’s voices were pleasant and instructional.
Ray had been a patient at the clinic for many years and would go through periods of cooperating or not cooperating with treatment. After a hospitalization he would take medication for a while and then stop. Soon problems would arise. Even with medication Ray had few skills of daily living, disorganization being prominent if he was treated or not. He had problems paying his bills, cleaning his house and maintaining personal hygiene. At the time this incident took place, he had been assigned a caseworker I’ll call Betty, whose job it was to ensure that his daily living needs were met. She was new to the job, but not new to helping, having worked in youth programs and foster care. She was a college graduate who’d had little exposure to mental illness and was very earnest in her role as helper. I was her colleague, not her supervisor and would try to give her some hints about the best ways to approach some problems. One big issue was smoking. Ray rolled his own, always having a pouch of Drum tobacco and papers. A problem with this was the ash constantly falling and the burn marks on the rug and the bedding and Ray’s clothing. It was rare that I saw him without a smoke in his hand and all of the other residents of his rooming house shared his habit. Betty was concerned about fire and tried a hundred different ways to make Ray’s smoking safe. Unsafe smoking was part of the job, but no Doctor would admit a mental patient for unsafe smoking.
Betty came to me one day and told me that she’d been to Ray’s house and he’d been in his kitchen standing at the stove with a frying pan on high. In the pan were leaves and twigs and berries from the yard. They were burning. Betty asked him to stop and he did. When she asked what he was doing he responded, “I practice a form of animism that demands plant sacrifice. A number of prophets have requested that I do this.” Dumbfounded, she made him promise to stop and he did. When I saw him downtown later that day he was agitated. I asked him what was going on, he told me that there were many demands on him and he was always being told by someone to do something.
I asked Betty to meet me at Ray’s the next day after finding out he‘d most probably stopped taking his medication. Due to another crisis, I arrived late and found Betty standing over Ray who was sitting on his bed. “Don’t you understand that those voices you hear, those things you are told to do aren’t real! Those are symptoms of your illness. When you hear those voices you need to ignore them, just pretend they’re not there. The pills will make them go away. All these ideas you have aren’t real. It’s all part of the illness. Promise me you’ll take the pills.” Ray knew how to be a good patient and nodded until she stopped. I walked through the house and on an enclosed back porch found burn marks and charring in several locations where there’d been fires on the wooden porch floor. I asked Ray to come out. “Is this part of your sacrifice? It looks like you’ve done it a couple of times.” He admitted it was him, “I have to do it, there can’t be redemption without sacrifice. “He said. I responded by telling him I understood, but that starting fires on the floor of a wood frame house put everyone at risk. “You’ve been really upset for a while now. How about I arrange for you to go to the hospital for a short stay and you can relax and let other people worry for a change?”
Ray was relieved as Betty and I drove him to the hospital. On our return she asked me about her conversation with Ray. “Can’t we make him understand that the voices are symptoms?” I replied, “The voices he hears are real voices, not like the internal voice all of us have. He hears them just like you are hearing my voice. The voices take on power, like in his case helping him to create his identity.” Noting her Irish surname I asked her if she was raised Catholic. When she responded yes, I said “Suppose you heard the voices of Jesus and Mary and you were convinced that you had a special relationship with them and they spoke to you all the time. Would you do what they say?” “Of course”, she said, “But it’s not the same.” I responded with a favorite quote from Isaac Bashevis Singer. “Religion is faith, not reason.” What I understood was that because of his voices, Ray’s beliefs are stronger than ours.
Is this really true? Are you sure it's not denial?
ReplyDeleteBelieve me it is not denial. My son suffers from this terrrible illness and when he hears voices and has delusions they are very real to him. There is no way to convince him other wise or to try and reason with him. He is tortured and belittled by these voices and will do whatever they tell him. If you've ever experienced this you'll know it is def. not denial. If we try to explain to him that the voices are not real, he says he know that we are hearing them too and that we're just pretending not to in order to make him take meds. that he doesn't need. It's a very emotional thing to witness.
ReplyDeleteThe voices are very real to the person who hears them. If family members respond to the feeling being expressed rather than the content that seems to work better. So ,instead of "No you are not hearing voices," say, "That sounds really frightening, how can we help you feel better?" Terry Garahan
ReplyDeleteFor some people the only voices they hear that disturb them are the voices of their abusive doctors saying their sick, or that they have an illness, that they( the victim) cant see, but the doctor can, and the doctor can then poison the victim who doesn't hear voices, and doesn't have a mental illness as much as a mental anchor on their back by mental health, and their arrogance and their need to poison, lets just call them all uninsightfull, along with their entire family telling them to not poison their loved ones, and if that's not enough lets call them Anosognosics, and lets call their family that as well, and all we've got to do from there is give them psychotropics because they've got any mental illness out there already in them, and if they're still beating us and making us feel bad about our care, well electrocute that claim away, next patient.
ReplyDelete