Coming to terms with learning to manage hallucinations
Reprinted from "Self-Management" issue of Visions Journal, 2003, 1(18), pp. 17-18
People who cannot distinguish reality from illusion may be worse off than those who are terminally ill. We often hear of the mind's great power to overcome a physical ailment, even one that's considered incurable. But what if the ailment is part of the mind itself? Unlike those who suffer from diseases such as cancer or AIDS or those who are physically challenged, people who suffer from hallucinatory and delusional symptoms of schizophrenia have no idea where the problem is, since the mind itself is playing tricks on them. What mental anguish do these people feel as they go through this continuous nightmare? How can family and friends help, if at all?
My brother was a normal teenager, bright, conscientious, and academically brilliant. Five years ago, a few months after we arrived as high school students from Hong Kong, my brother became very sensitive towards 'noise.' One day we were on the bus on the way home from school; he turned to me and said, Did you hear what other people around us are mumbling about? Not only was he staring at the person he believed was talking about him, he also started responding to what he heard by mumbling to himself. He earnestly told me that people were following him around all day and were mocking and ridiculing him. Initially, I thought it was some kind of a joke and replied like most people would:
"What do you mean? I have been with you all day and have not seen or heard the people you are talking about."
"Of course you wouldn't notice. They're after me. They belong to a group that's targeting me only," he said.
Though he let the conversation drop, over the next few months such conversations would occur again and again. As time went on, he became more and more obsessed with the voices in his head. He was always ready to give me detailed, seemingly-logical answers whenever I questioned what he saw or heard. With my limited knowledge of psychological illnesses, one day I had a talk with him and told him how I thought we could approach the problem. We started out by doing some research on the internet together. Everything we read seemed to point in the direction of schizophrenia. I was still hoping that I would be wrong. However, after we consulted with a psychologist, my brother was tentatively diagnosed with schizophrenia.
A few weeks after seeing the psychologist in Burnaby, one day my brother sobbed desperately at school that he wanted to kill himself. Not knowing what to do, we went to an instructor we knew for help. He suggested we go to Vancouver General Hospital immediately. By the time we arrived at VGH, he was getting desperate about the voices in his head, "I hear a lot of voices all around me. People are mocking and jeering at me non-stop. I can't take it any more. I feel like..." After some eight hours of examination by doctors and psychiatrists at the hospital, my brother was hospitalized in the mental health ward for the next few weeks.
During his stay in the hospital, he was put on different medications and dosages every two weeks as the doctor was trying to find out what worked best for him. Each medication brought on different side-effects: dry mouth and fatigue, for example. But regardless of what medicine he took, side effects inevitably came with it, although some less severe than others. On the medication with the least side-effects, my brother looked happier and more relaxed, and heard no voices. I went to see him after school every day. However, when I took him out of the ward for a walk, the voices would come back to haunt him, especially in crowded areas. After a month or so, he was released from the hospital.
As the days passed, he became increasingly more upset and worried about how he could continue with his life, especially with school, when he found out that the medication could only reduce hallucinatory symptoms, but could never be able to eliminate them all. In addition to my brother's difficulty in accepting this fact, our parents, who live in Hong Kong, were also stunned to learn of his mental illness and of its incurable condition. Months after he was released from the hospital, a friend introduced my brother to a woman in her 60s who'd been suffering from schizophrenia for the last 20 years. She had it so bad that she couldn't hold down a job, left her family, and was homeless for many years living on skid row. When my brother spoke to her, even though she was still on medication, her life had normalized. He spoke to her at length in a restaurant on Commercial Drive. Asking very few questions, he was listening to her most of the time learning from her experience. Inspired after listening to how she survived the illness, he told me that he wanted to overcome this illness with as much courage as she.
For a few months, he did demonstrate courage in fighting this illness. Whenever the voices started to cram into his head, he would first ask me whether I heard those voices as well. If not, he would try to convince himself that the noises were not real. But, when the voices got too unmanageable, he would learn to tell me about them instead of mumbling to himself. For a while, it did appear that he was on top of things.
With more confidence in living with unreal voices, his illness became more stable or so it seemed to us. However, his increased confidence also prompted him to skip dosages. I didn't know until the university counsellor sent him to the hospital again. He fightingly said, I heard a lot of noises around me again. A lot. Nonstop. I've forgotten to take medication a few times in the last two weeks. I didn't mean to do that. I just forgot. You can't understand. I can't focus in class after taking the medicine. Every time he skipped his medication, he had to start with a new medication plan that doubled his original dosage. He was also forced to go back to the ward again for the next couple of weeks. He said he deeply regretted what he had done.
Being re-hospitalized must have taught him to be more vigilant in taking his medication. Rather than being apathetic and frustrated, he was more zealous than ever in fighting the hallucinations. Not only was he willing to go out alone, he also improved his strategy in dealing with the voices. Whenever he heard too many voices, he would try to go to a quiet place to empty his mind. He also tried to convince himself that those voices were unreal. But if he felt he was losing self-control, he would try to reach me, friends or even our parents to distract himself from the voices. Sometimes, he would bring a CD player along with him wherever he went, so when disturbed by voices, he would just put on his headphones and try to ignore them. Though small, these pro-active techniques did help my brother cope with the symptoms.
The voices would appear and disappear like waves rising and subsiding. A couple of years ago, when another wave of symptoms came crashing in, he made a difficult decision to quit school and return to Hong Kong. Under the care of a psychiatrist there, he is now in his last year of university. The waves still come and go, but he finds the symptoms more manageable living at home.
Though I couldn't, and perhaps never will, understand the mental hell he has gone through and is going through, there are a few things I have found effective in helping him cope. First, telling him what is exactly happening in reality can help him make a distinction between what is real and what is not. This is crucial in helping him actively fight the voices. For my brother, and I suspect for most people in a similar situation, accepting the illness seems to be the most challenging task, because a passive attitude would lead him to be completely dependent on the medication and reduce any effort in dealing with the illness. But once he accepts his condition, he will learn to deal with the symptoms actively. Second, family support is another big resource in dealing with schizophrenia, especially at the beginning of treatment. His confusion, as well as the negative side-effects of the medication, can easily lead to passivity. Family support gives him the strength for positive thoughts.
In a phone conversation with him last week, my brother now seems to be living a fairly normal life. He knows that this is a challenging and difficult journey, but he tells me that he won't allow the voices to interfere with his life. The more noise I hear, the more I am going to fight it, he added.
About the author
MC Is a 3rd year international psychology major at SFU and volunteers in the Chinese Mental Health promotion program at the Canadian Mental Health Association's Vancouver/Burnaby branch