Anyone who has cared for the mentally ill knows that while people sympathize with the sick and disabled, they often regard the mentally ill with fear and suspicion. And such fear and suspicion is especially common towards schizophrenics. Carers thus find themselves not only stressed and exhausted but also isolated and lonely.
The Nature of Schizophrenia
Schizophrenia can be scary, both for the person affected and those who care for them. In part, this is because schizophrenics seem so unpredictable. While obsessive compulsives or depressives can be demanding, their behavior is at least comprehensible. With schizophrenics, things are different. It is the fact that their behavior is both strange and unpredictable that frightens people. As with so many things in life, the best antidote is reason and knowledge.
First, it must be stressed that there is no typical schizophrenic and that the word covers a wide range of symptoms and behaviors. The paranoid schizophrenic, for example, believes others are persecuting him. Suspicion and fear dominate his life, along with an exaggerated sense of his own importance. The catatonic schizophrenic, on the other hand, refuses to speak or even move, sometimes adopting strange physical postures from which he or she will not budge. Then there is the disorganized schizophrenic, who is spared the delusions but whose personality disappears behind strange, incomprehensible speech.
Nevertheless, all schizophrenics exhibit at least two of the following: delusions, hallucinations, bizarre speech, and an inability to move or communicate. Perhaps the most common symptom is hearing a voice or voices. This often begins as a single voice that comments on the individual’s behavior, emotions, or thoughts. Whether friendly or hostile, the voice seems to be autonomous and to come from elsewhere. Later, it may be joined by other voices, who then engage in discussions and even arguments.
Men usually have their first psychotic episode during adolescence, or in their early to mid-20s. Women tend to have their first episode slightly later, usually in their mid to late 20s. In general, however, schizophrenics do not reach their mid-20s in perfect mental health and then suddenly change. Instead, they display slightly odd behavior in their youth which later escalates. For example, they mumble to themselves in public, or make statements that seem vague and unreal, as if they are partly in your world, partly elsewhere.
Caring for a schizophrenic can be stressful and lonely. Neighbors, and even family, often lack sympathy and understanding. Indeed, the carer may overhear nasty remarks in the local shop or bus stop, like “her son’s totally crazy,” or “stay away from that family, his brother’s a lunatic” etc. And even those who do sympathize may still be wary. The most rational person can swiftly regress to primitive fear when confronted by the strange or unnerving. “Madness” was once believed to be contagious or infectious, and, in spite of our science and skepticism, many retain vestiges of this fear.
Such fear isn’t helped by popular horror movies, of course, in which some apparently normal kid from the leafy suburbs starts to hear voices urging him to kill and maim (in fact this is a myth – the vast majority of schizophrenics are not violent). Even the word “psycho” is a corruption of the psychiatric word “psychosis.”
The family must therefore cope not only with a distressed and confused loved one but with the suspicion and hostility of neighbors, many of whom believe that their loved one ought to be locked away. Parents, for example, feel guilty and wonder if they did something to cause all of this. And naturally carers find it hard to lead a normal life themselves.
Schizophrenics often experience a great deal of fear, and so understanding their world, and empathizing with their struggle, should be a priority. The writings of the British psychiatrist R. D. Laing would be a good place to start. Laing spent his career treating schizophrenics and wrote several books on the subject. Though his theories remain controversial, former patients often spoke of him with deep affection, and his sympathy for them, and the immense effort he put into understanding their world, is moving. Laing also expressed anger and contempt for conventional psychiatrists. In fact, so hostile did he become that he set up an experimental community in East London, where patient and doctor lived on equal terms.
According to Laing, schizophrenics never develop a strong sense of self. They are, in his words, “ontologically insecure.” Because of this, they fear strong, overpowering personalities. While the average individual merely finds such people annoying, the ontologically insecure find them threatening. They fear being overwhelmed (or “engulfed,” as Laing puts it) by the sheer strength of such personalities.
In defence, they develop a series of false selves. In other words, they pretend to be someone they are not. Their true self, the person they feel they really are, is thus hidden. Gradually, unable to engage with others as their true self, they live an increasingly false or inauthentic life. Their true self then shrivels up or withers away. Eventually, the whole system collapses and they have a breakdown.
The refreshing thing about Laing is his passionate insistence that we treat the schizophrenic as a person and not as a patient. Instead, we seek to understand schizophrenia but not individual schizophrenics. Above all, we must show the schizophrenic love and compassion. It is worth quoting Laing on this point. In The Divided Self, he writes “by understanding I do not mean a purely intellectual process. For understanding one might say love…One cannot love a conglomeration of ‘signs of schizophrenia.’ No one has schizophrenia, like having a cold…What the schizophrenic is to us determines very considerably what we are to him.”
It must be stressed that not everyone agrees with Laing, however. Some take a wholly reductionist view, explaining schizophrenia through genetics and neuroscience. If possible, speak to those who have recovered from, or learnt to live with, the disorder. Some reject the medical route and refuse to see their schizophrenia as a medical problem. Instead, they live with the symptoms, literally befriending the voices in their head and accepting them as part of their life. Again, it is important not to become carried away. Some who refuse conventional treatment go on to lead relatively normal, happy lives, while others deteriorate still further, ending up homeless or in jail.
It isn’t true, as the critics sometimes claim, that Laing romanticised mental illness. He knew better than anyone the terrible pain involved. And he knew that in many cases it did not lead to a mystic breakthrough but only to confusion and pain. When he writes that no one has schizophrenia, like having a cold or a flu virus, he simply means schizophrenia can be a way of coping with life, and that the more you empathize with the individual, the more help you will be.
Even the experts still disagree on the precise nature of schizophrenia. So do not be too hard on yourself. You cannot relieve your loved one of this disorder, and you probably had little to do with its development. Your priority ought to be making their day to day life as safe, happy, and secure as possible.
Physical health is also vital, so make sure that both you and your loved one eat regular, healthy meals and take gentle, regular exercise. And minimize stress. If they have decided on conventional treatment, be sure they take the correct dose of their medication at the same time every day. Anyone who has taken an anti-depressant, for example, knows that skipping doses can have nasty consequences.
It may also help to keep a detailed record of day to day life. Make a note of everything that affects them. Which form of medication calms them down and improves their mood? Which of their symptoms distresses them most? And which symptoms usually precede a particularly bad episode? By keeping such records, you will become more effective at helping them, and you will get to know the warning signs, such as difficulty sleeping or social withdrawal. That way severe bouts of psychosis might be averted. Such information may also prove valuable to their psychiatrist.
Finally, consider how you respond to their more extreme behavior. If they inform you that they can see something you cannot, or hear voices you cannot hear, what do you do? Do you smile and agree, or do you tell them they are just imagining it?
In general, it would be sensible not to challenge them. And you should certainly not become angry or aggressive. Remember, to the schizophrenic these sights and sounds are very real. If you do inform them that you cannot see such and such a person, or that you cannot hear such and such a voice, do so calmly and politely. Don’t make a big deal out of it or you may cause them stress and thus worsen their symptoms.
Caring for the mentally ill is never easy, so do not neglect your own health and happiness. This will do no one any good, least of all the person you care for. After all, the healthier and more energetic you are, the better carer you will make. And be kind to yourself. Caring for the mentally ill is tough, and you will have moments of rage and self-pity. You will also have plenty of dark, shameful thoughts. All this is quite natural. Just do your best – no one expects any more.