Accepting Your Loved One Has A Mental Illness
Like the phases of grief, parents and family members go from denial to acceptance when a child or loved one is diagnosed with a mental illness.
Too often families coping with a brain disorder in a close relative neglect their own health. They are so emotionally involved that they fail to realize that they are under tremendous strain. This pamphlet is based on ideas from families around the world.
When anyone gets sick with any serious disorder they go through the various stages outlined in this pamphlet. Disbelief and denial are the first to appear, followed shortly after by blame and anger. When someone becomes ill with a brain disorder like schizophrenia, feelings and emotions are not very much different. What may be different is the long time people take to recognize mental illness and the need to seek treatment.
We hope that the pointers presented here will help families understand that feelings of loss, blame and sorrow are quite normal and that there are ways of overcoming them in time.
Most people, when faced with the diagnosis of schizophrenia in a loved one, go through a phase of denial. This makes it very difficult for other members of the family to cope. Any efforts they make on the "patient's" behalf may be stymied when another family member won't accept the diagnosis. Removing the defences of a family member who is protecting himself by denying that a real disorder is at work is difficult and distressing. Arguments may occur to disrupt the household even further.
There is no particular solution to this problem except to provide information about schizophrenia, so that the person can see that many of the events happening in his family could be related to the disorder. Time may be the ingredient necessary for acceptance even when knowledge and support are available.
Sometimes families look around for a scapegoat for their situation. A common one is the doctor/psychiatrist. Sometimes the victim himself comes in for some blame. The sooner everyone realizes that the real enemy is the brain disorder itself, the sooner they can begin to cooperate with each other and work towards the person's recovery.
To come to terms with feelings of shame, it is necessary to assess how you felt about mental illness before it happened to you. If your attitude was of compassion before, then you may have no problem with shame. If you viewed mental illness with fear, extreme embarrassment or even horror, your feelings of shame will be difficult to overcome. Remember that 30 years ago people were ashamed if a relative developed cancer. It was spoken of in whispers because it frightened and horrified people. Today no one would dream of being ashamed about cancer. Through education, understanding and better medical knowledge, society has come to terms with a devastating disease. In time, this will be true about schizophrenia.
You may feel that you cannot tell anyone about the schizophrenia in your family, but making up false excuses or white lies for your relative's behaviour will only compound the problem which is difficult enough. Confide in close friends who will lend positive support.
Finding the words is sometimes difficult. Calling schizophrenia "a mental breakdown" or a "thought disorder" is an introduction to further explanation if you cannot bring yourself to say the word. Explain some of the symptoms. Your friends will want to know, as you did, what schizophrenia means. You may want to join a self-help group where your problems will be treated in confidence, where you can speak freely about your experiences and fears.
In many countries, schizophrenia family organizations provide a help line where you can talk about your situation. You should also request information from this source. There are also chat sites on the world-wide web.
Whenever anyone gets any illness, members of the family wonder how the illness developed. The difference with mental illness is that society has, for a long time, erroneously believed that it had to do with family life or events in one's past. Thus people spend endless hours wondering if in some mysterious way they could be responsible for the illness. It is doubtful whether families can avoid this soul searching but it is important that this initial reaction be overcome.
By listening to informed speakers through a self help group (WFSAD can provide literature and put you in touch with a local group), by watching documentary films and listening to radio programs about schizophrenia and by speaking to other families experiencing similar problems, you will realize that you are not to blame. More and more research indicates that schizophrenia is a biological brain disease with an as yet unknown cause.
Guilt over being well while one's loved one is ill is a common occurrence, particularly among siblings. It is difficult to enjoy your successes-a first job, attending college, relationships with friends, while your brother or sister has none of these. It is paradoxical that dwelling on these things may reduce your own self-worth. Parents may not appear to value your achievements because they do not want to upset the person who is ill. Support from close friends should enable you to rebuild your sense of self-esteem and your ability to be proud of your own achievements. Parents should not neglect their children who are well.
Strong emotions are natural when your suspicions are confirmed by a diagnosis of a brain disorder. Realize that anger can be destructive to other members of the family as well as to yourself. Your relative will also sense a more stressful environment.
When anger or grief are overwhelming, release these emotions in as harmless a way as possible, away from your family. This release may take the form of vigorous physical activity. One relative bought an old punching bag from a boxing gymnasium and hung it in his garage. Another would drive to a quiet spot and scream as loud as she could for several minutes to release the built up tension. A third relative enjoyed squash and would force himself to go to the squash court and play at times of anxiety. Some relatives simply go out for a long walk or run. Everyone should experience the release of tears, the body's own way of reducing tension.
None of us is perfect, so from time to time anger will spill over when you are caring for a sick relative and you will raise your voice in frustration. Many things that are said in anger are bitterly regretted afterwards. Try to maintain some control.
Accepting illness is often looked on as proof that you are not going to fight against it. It suggests resignation. Those who have been diagnosed quite naturally often feel that they are unable to accept the diagnosis.
Coming to terms with a brain disorder means knowing the stigma and fear with which society has surrounded it. If you accept what people say about the possible long-term nature of the illness, then hopes and dreams for the future are in jeopardy. Families sometimes continue to seek the same goals for their relatives, despite the limitations that the illness may impose on them. Not only the person, but also his family has to come to terms with the degree of disability imposed by the symptoms of schizophrenia, while still maintaining hope for the future.
When this is done, small measures of recovery can give rise to optimism and pleasure. This takes time. You may understand that you must accept what has happened, but actually feeling acceptance will be a long process. Knowledge can help family understand and begin to accept. Read the very good books available (see our book list). Accepting does not mean giving up hope. It means that you reduce the frustrations which stem from unrealistic objectives.
Even happy moments are difficult to enjoy. Sometimes it seems as if there are no happy moments. We are so busy seeing to the needs of our relative that we are worn out. Families have found that by putting parts of their lives into what one could call "compartments," they are able to feel some happiness. Thus, they force themselves not to worry about what might happen tomorrow so that they may enjoy a happy event today.
A sense of humour has helped many a family through difficult times. Laughter is therapeutic as long as you are all laughing together. Periodic breaks away from your relative will "recharge you batteries." Parents may have always shared holidays before. If this is not possible now, each family member must have recreational time free from worry.
Sometimes a caregiver tries to compensate for what she/he has lost in his relative by becoming over protective. Personal pain is assuaged by the total management of the relative's life. The person, often the mother, becomes dependent on the caring role, in some cases treating an adult son or daughter like a child. This is not only destructive to the care giver, it is also stressful to the person with schizophrenia. The motto should be "Moderation in Caring."
The more you learn about schizophrenia the more you will realize that you are far from being alone. The major mental illnesses are thought to have a prevalence of 5% (United States National Institute of Mental Health statistics). Schizophrenia itself has a lifetime prevalence of 1 in 100. Your knowledge will arm you against any ignorance you meet. You will feel satisfaction in being able to impart the knowledge you have learned.
When serious illness hits a family all the usual, well known behaviours of all the members are upset. Everyone has to adjust to the new reality. Because schizophrenia is a disease so closely associated with feelings and perceptions it is all the more important that the family react without too much display of emotion. It is also important that the person with the disorder does not feel abandoned because everyone is so perplexed. Quiet reassurances of love and respect are needed between all members of the family.
Source: World Fellowship for Schizophrenia and Allied Disorders
Last Updated: 21 March 2016
Reviewed by Harry Croft, MD