Talking About Severe Mental Illness

by Rethink

Introduction

A diagnosis of severe mental illness, such as schizophrenia, is likely to be very disturbing to the person affected and their family. It may be difficult to come to terms with what is happening and it may take some time before everyone can begin to deal with the situation.

Communication about the problem is likely to be particularly difficult at this stage. Family members may feel awkward talking, even amongst themselves, about the fact that a close relative has a severe mental illness. Parents may feel acutely guilty, thinking that they might be to blame for the illness. Brothers and sisters may feel embarrassed or angry that their sibling has developed such a socially unacceptable illness. All family members may become acutely worried about how the illness will affect them now and in the future. Dealing with how this new knowledge should be shared with others involves deciding on a number of issues, eg:

• Who needs to know?
• What do they need to know?
• What does the person affected by the illness want people to know?

He or she may be sensitive about the diagnosis or even unaware of it. If he lacks or has lost insight into the illness he may not recognise that he is ill. His degree of awareness will inevitably shape your decisions about what to say.

Family and Friends

This is a difficult issue. A diagnosis of severe mental illness, such as schizophrenia, is very worrying for families partly because it often evokes fear. People with a diagnosis of schizophreniaare often portrayed in the media as frightening or threatening, with symptoms which are rarely treatable and whose condition can only be successfully managed by professionals like psychiatrists and social workers. This view is misleading. Most who have the illness are vulnerable and withdrawn and more likely to hurt themselves than others. Supportive help from family and friends who understand the problems associated with the illness is very effective in promoting recovery.

Perhaps only the family members in direct contact with your relative need to know in the early, acute stages. They may have been subject to the very distressing or threatening behaviour of their relative; they may be both relieved and horrified by the diagnosis. The fear and distress is real and can be reduced by providing them early on with:

• accurate, up to date information about the illness,
• reassurance about the effectiveness of well managed treatment,
• guidance in ways of being supportive and, most importantly,
• opportunities for them to talk through their worries about what has happened.

If you are struggling to cope yourself and are not ready to involve those family members not actively involved in support, you could perhaps delay telling them until the acute phase is over.

Friends who continue to be supportive may be more comfortable with a description of the illness as a «breakdown». Though this may seem dishonest, it may be a necessary first step. Faced with a diagnosis of schizophrenia, some people may react with such fear that they abandon the person affected, increasing his social isolation at a time when he needs consistent support. As recovery gets under way they can be encouraged to understand that:

• the person they care about has a diagnosis of schizophrenia: he has not become a «schizophrenic»
• schizophrenia is always treatable
• people can recover from schizophrenia
• positive attitudes and constructive support will improve the outlook very significantly.

They can then be encouraged to explore constructive ways in which they can support the person.

There are different ways of introducing the diagnosis gently, but all discussion about it should be handled honestly. Trying to deny or hide the nature of the condition and its consequences from those who need to know often seems the safest thing to do at first. The carer will be in the first stages of learning how to accept and cope with the new situation yourself and you may not be ready to share this new knowledge. It will be important to overcome this though, as failing to do so may lead to problems later. It is important that the diagnosis of schizophrenia is accepted by both the person affected and their carer so that constructive work can be done to manage the condition and promote recovery. Introducing it in the context of learning about supportive treatment, care and recovery can be the most constructive way of dealing with this problem.

Employers and Workmates

People outside the family, who may need to know at an early stage, for example, the person's employers, present a difficulty at this stage. There is so much ignorance about severe mental illnesses, and schizophrenia in particular, that employers are likely to be very unhappy to be told that their employee has schizophrenia. This could have serious consequences for the future employment of the person concerned. In the early stages you could tell the employers that their employee is suffering from «stress» and give more details later if necessary. Careers should enquire about sick leave, compassionate and unpaid leave and any other conditions of employment for both themselves and the relative for whom they are caring, and should seek further advice before making any decision regarding the possible termination of their own or their relative's employment. This is because the rules on claiming benefit if a person leaves work voluntarily can have an effect on the payments allowed for a considerable periods.

About the Author

www.rethink.org
Rethink is the largest severe mental illness charity in the UK. We are dedicated to improving the lives of everyone affected by severe mental illness, whether they have a condition themselves, care for others who do, or are professionals or volunteers working in the mental health field.