Someone close with schizophrenia: understanding and supporting

1. Before you begin

Your son is twenty-three. For weeks, he had hardly left his room. He had taped paper over the window, and one evening, very calmly, he explained to you that the neighbours were recording your conversations. Then came the emergency department, the hospital, and a word spoken in a corridor by a doctor in a hurry: schizophrenia. You came home with a prescription, an appointment date, and no idea what to say at dinner.

Perhaps it is your sister or your husband, and perhaps the diagnosis goes back ten years. The questions stay the same: what did I do, what should I do, and how long can I keep going.

Three things, straight away.

You did not cause this illness. Schizophrenia does not come from a bad upbringing, from a lack of love or from one argument too many. It arises from the meeting between a vulnerability that belongs to the person, largely inherited, and outside factors, such as stress or heavy cannabis use. The idea that parents, and mothers above all, could bring it about was widespread in psychiatry from the late 1940s to the early 1970s. Research never confirmed it, and this idea, which pointed the finger at culprits, probably did families a great deal of harm.

What you do every day matters, and it can be learned. Many trials have shown it: when families receive organised information and support, relapses and hospital admissions decrease. This is not about becoming a health professional, but about learning a way of talking, of noticing and of planning ahead that makes life calmer for everyone.

You have the right to be helped too. Relatives carry a heavy load, often for years, and they are rarely asked how they are doing. The programmes designed for them reduce their distress. This guide talks about you as much as about your loved one.

2. Schizophrenia, in plain words

An illness of perception, thinking and drive

Schizophrenia changes the way a person perceives the world, organises their thoughts and finds the energy to act. At times, it brings on what doctors call psychosis: a state in which the person partly loses touch with the reality that other people share, and believes or perceives things that nothing confirms.

What is added to ordinary experience

Delusions are firm convictions that evidence to the contrary does not shake, and that the people around the person do not share. The most common are ideas of persecution, such as believing you are being watched or poisoned, or the impression that a glance in the street or a song on the radio contains a personal message.

Hallucinations are perceptions without an object: hearing, seeing or feeling something that is not there. In schizophrenia, they are mostly voices, which comment, criticise, insult or give orders. Our programme Hearing voices: understanding and coping is devoted to them.

Doctors call these two phenomena positive symptoms. The word does not mean that they are good: it means that they are added to ordinary experience.

What becomes disorganised and what is lost

Thinking can become hard to follow, and behaviour can lose its thread: this is called disorganisation. Negative symptoms, for their part, take their name from the fact that they take something away: drive, initiative, the pleasure you expect from an activity, the wish to see people, the expression of emotions on the face. They are often the ones that weigh most heavily on daily life, and the ones that those around the person understand least, because they look like laziness, which they are not.

Many people also have cognitive difficulties, that is, difficulties with the everyday operations of the mind: concentrating, remembering an instruction, organising the day. They do not mean that the person is less intelligent, but they explain why the shopping list called out in the hallway has been forgotten by the time they reach the shop.

Finally, schizophrenia is not a split personality, nor an intellectual disability, nor an illness that makes people violent (section 5). This guide is one of a series of three guides for families and friends, built in the same way: if bipolar disorder or borderline personality disorder affects your loved one or another member of your family, Someone close with bipolar disorder: understanding and supporting and Someone close with borderline personality disorder: understanding and helping explain each of these disorders and what you can do day to day.

Who is affected, and how it begins

According to the World Health Organization, about one person in three hundred lives with schizophrenia. The illness most often begins in late adolescence or in the twenties, a little earlier in men. It is often preceded by several weeks or months of changes, which doctors call the prodromal phase: the young person withdraws, their marks drop, their sleep becomes disrupted, they become irritable or suspicious. Many families first thought it was a teenage crisis: these signs are hard to read, even for professionals, and there is no reason to blame yourself for it.

Very different paths

Some people have only a few episodes, separated by long periods in which they are well; others keep lasting symptoms. You will read figures that seem to contradict one another: that is because they do not measure the same thing. The World Health Organization states that at least one person in three sees their symptoms disappear completely, and this figure looks only at symptoms. A review of fifty studies, published in 2013, required much more: a clear improvement in symptoms and in social life, such as work or friendships, at least one of which had lasted for two years or more. With this definition, about one person in seven had recovered. In between are all those who are better without being perfectly well, and who build a life that suits them.

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