Living with Schizophrenia: A Pastoral Perspective

by Robert Uken, M.Div.

When people receive the diagnosis of schizophrenia, they-with their families-experience a severe blow to their self-esteem. They must deal with feelings of shame and guilt.

Can they talk openly about what they are experiencing? Why is it that people often do not want others to know? Why do people in treatment for mental illnesses sometimes insist no one informs their church they are hospitalized? They worry about how others will respond to them: "What will others think? What will others say? Will we be branded for life as 'different' or even 'crazy'?"

Despite the gains we have made in understanding and treating mental illness, still there is considerable stigma. People diagnosed as having schizophrenia face the stigma and so do their families.

The faith community, or church, is a place where one most expects understanding, acceptance, and support. And yet, people are disappointed to discover they suffer alone or are misunderstood. Churches are not immune to the effects of stigma. How the faith community responds during this crucial time and throughout the course of the disease will affect those with the illness and their families for good or ill. It does make a very important difference.

Toward Understanding

What a profound loss to discover that a loved one has schizophrenia! Schizophrenia is an unpredictable, expensive illness with unknown causes and uncertain prognosis. Life does not go on as it would for a person who is seriously ill with appendicitis, has an appendectomy, and recovers.

Young adults in their prime find their dreams dashed. When others their age are discovering their own potential and planning for their future, they are discovering so painfully how schizophrenia limits their potential-at least temporarily and maybe permanently. Families are thrown into grief with the person with schizophrenia. Some describe this grief as "chronic sorrow" or "no-end-grief" because schizophrenia has no known cure and its effects may be ongoing.

Often families suffer alone and/or in silence. How does one grieve a loss like this? It is not like grieving the death of someone we love. That death is final and the grief painful, yet we know how to mourn. We have rituals that help us say "goodbye" to a loved one who dies. We know how to help each other face life without the person who has died.

We do not use these kinds of rituals to help us grieve the death of a dream or the loss of health. These losses need grieving nonetheless. The pain of the losses may come and go and come again and again and again.

Families and victims need support for the long haul. The stress of living with an unpredictable illness is great. This is especially difficult for people and their families who have experienced one or more relapses. "How can I plan for the future? How long will I be symptom-free? When will the next relapse happen? Can I resume my education and career plans?" At times, there seems to be no relief.

There are many factors that contribute to alienation, isolation, and misunderstanding. Those with the illness may have little awareness of the process of the disease. Their own thoughts and feelings may be disturbing and opposed to what they have learned to expect of themselves as people of faith. They sometimes judge themselves as unacceptable to the faith community. Or they project their own judgments on to the church. They perceive that the people in the church are condemning them for their lack of faith. As a result, they pull away from the church.

Their illness may make it impossible for them to tolerate the stimulation of being in a worshipping community. They may not be able to socialize and visit as is often expected in church.

Sometimes it is impossible to think clearly. Bible reading may be more confusing than helpful. Prayer may seem impossible. They may feel they are losing their faith. At times, they may have delusions of being either Christ or the devil. Some may hear special messages or commands from God or demons. These experiences are frightening.

It is also difficult for the faith community to deal with these issues. The church may not understand why a person does not come to worship. Sometimes church communities diagnose people with schizophrenia as demon-possessed. Some may say the person lacks faith or does not have a right relationship with God. Well meaning people compound the victim's suffering and pain with this wrong diagnosis. They may try exorcism, faith healing, or urging the victim to repent.

Nothing changes. The thoughts persist. The delusions are still there. Then people are left wondering whether the church is right-that they do have demons. They might conclude they are evil and God is abandoning or punishing them. Some think they are lost.

Just when they need to be reassured in concrete ways that God is with them and the church is praying for and supporting them, they feel the church is judging, punishing, even abandoning them.

Understanding is so important to genuine caring and support. It is impossible for any human being to know exactly what others are experiencing without seeking to enter their lives by careful listening and understanding.

We can take some of the pressure off ourselves if we are willing to allow the family and person dealing with the disease to become our teachers. Invite them to share what they are experiencing and what they need. Do not do this just once. Stay in touch to carry the burden of an ongoing illness.

A Challenge for the Church

The challenge for the church is to become a caring community in which people feel understood, accepted, supported. It's where they need to experience God's grace. Such a community has positive healing effects for anyone.

How the faith community deals with people with schizophrenia and their families depends in part on how well it deals with its own brokenness and the pain of life. Does the faith community give the impression that it is not acceptable to be less than perfect? When we are uncomfortable with our own humanness, faults, and brokenness, we feel uncomfortable around other people who reveal some of the same human weaknesses and brokenness. In a sense, a person who more visibly evidences human frailty mirrors our own human vulnerability.

When suffering people experience others backing away from them, isolating them, perhaps even scorning or condemning them, their suffering increases. When they need to know God is with them, God's Body (the church) is often out of touch with God's compassion and mercy. The sufferers must experience God's compassion and grace through others who feel deeply the hurt without shrinking away, offering a quick fix, or recoiling to protect themselves.

We become uncomfortable and anxious when we don't know what to say or how to be helpful. The feeling of helplessness is powerful. Rather than feel this discomfort, we're tempted to withdraw. We want to pray and see God at work healing. When this doesn't happen the way we expect, it challenges our own concept of prayer and God.

To rethink and wrestle with God and ourselves is a frightening task. There is the additional burden of unanswered and unanswerable "whys." How tempting it is to take the easier ways of withdrawing, blaming, or coming up with easy answers.

Churches and society have often blamed families for the illness. For centuries, the church has been tempted to deal with pain and suffering by asking "Who sinned?" Think of John 9. Jesus' disciples asked about the man born blind: "Who sinned, this man or his parents?" Jesus answered that discovering who sinned was not the issue. He said we must be doing the work of God while it is yet day. We must focus energy on healing, helping, and caring. He went on to do what he could to make this man's life whole. You know the story-Jesus mixed the mud, anointed the eyes, sent the man away to wash, and the man came back seeing.

It is our challenge to lessen the effects of the illness, brokenness, handicaps, and limitations. We must break down alienation and work toward reconciliation. We must include those whose weaknesses are more obvious. We must be a caring, healing community.

Additional Resources about Schizophrenia

The National Alliance for the Mentally Ill Literature Committee compiled this list of recommended readings. We include it with their permission and hope you'll find this updated list helpful.

National Alliance for the Mentally Ill, 200 North Glebe Road, Suite 1015, Arlington, VA 22203-3754 Telephone: 703-524-7600, FAX: 703-524-9094.