5. We Must Stop Blaming Families

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This is the fifth in a series of seven articles called “Breaking the Silence,” by Patricia A. Forsdyke Past President of the Kingston and Napanee Chapter of the Schizophrenia Society of Ontario

There is relief from anguish in action. But what is a family to do when there is so much silence surrounding schizophrenia? It is often a year or more into the illness before a family seeks help. Sometimes the doctor won’t give a diagnosis and often won’t allow the family to give information.

Families almost always bear most of the responsibility, but are given little information. Some families have been scolded about using the word “schizophrenia.” “Don’t you go putting labels on your relative,” say some doctors. How can families possibly gain access to honest help with such attitudes? Would a physician say to families, “Don’t use the word ‘diabetes’?” Families need to know what they are dealing with.

Most of the families that seek help from the Schizophrenia Society have nowhere else to turn. They need help fast. Many have already tried other avenues. Some feel that they are at their wit’s end. But as families care the most for their loved one, with support they can move mountains. Many families have been deeply hurt by professional health-care workers, and valuable time is lost when families are directed towards the wrong kind of help.

Despite the hurdles, few families give up the struggle to get help. Families are often surprised when they find themselves among very normal families coping with the same illness and its bizarre symptoms.

In general, the higher the professional status of the family, the slower they are to reach out for help. This is a pity because these families have more clout, but they may also have more to lose. Some families stay in denial longer and try to rationalize the behaviour of their ill relative. Families often feel guilt for their relative’s condition.

Families with money can sometimes hide schizophrenia longer. A case in point was Rosemary Kennedy, President John F. Kennedy’s sister. After Rosemary’s lobotomy for her mental illness, her family rallied to the cause of mental retardation (not to that of schizophrenia). But high-profile families seldom hide when they have dealt with schizophrenia before. They get help fast.

But all families are faced with same symptoms of the disease. The rich can, of course, purchase the very best medicines, if they can access a well-informed doctor. There are some excellent physicians working with the seriously mentally ill, but they are all too few.

There are reasons to hide the illness. Families lose their network of friends and sometimes can’t tell their extended family. There is so much pain. And yet the quicker they get everybody on board, the better it is for the patient.

But here is the treatment catch:

  1. Everyone has the right to refuse treatment.
  2. The more seriously ill people are with schizophrenia, the less they are aware that they are ill, so if they are very ill, they refuse treatment for an illness that they do not believe they have.
  3. Schizophrenics who are willing to be treated are aware of their illness and are therefore considered less ill and not yet in need of treatment. As a result, they become more ill and eventually refuse treatment.

This is a terrible Catch-22.

We must stop blaming families because often they are constrained by the sick person’s wishes. They are powerless to get their relative off the street. Inadequate mental-health legislation ties their hands. Community treatment orders that would help patients stay on their medicine do not exist in Ontario.

More public education does benefit families. Hopefully, in the future families will not lose half their friends when they reveal that a loved one has schizophrenia. In the past, there have been enormous drawbacks to being open about schizophrenia. The stigma associated with schizophrenia has engulfed the whole family, including the patient.

There are other reasons for keeping quiet. Families fear their loved one when the illness is not treated. In addition, siblings fear that they will become ill. Sometimes they confuse the behaviour of their ill teenage brother or sister as acting out. In particular, a twin who is not ill will be anxious about becoming ill. For identical twins, this is a real concern. Well children of a parent who has schizophrenia are often very traumatized. Some have actually done the parenting for their younger siblings.

Schizophrenia is the most serious of the mental illnesses. Schizophrenics have been robbed of so much. I frequently marvel at their ability to smile and joke on their better days when their illness is under control and their brains are allowing them to express themselves. Schizophrenics are demanding when they are ill. We might behave much worse in their circumstances. Unless we have schizophrenia, it is impossible to put ourselves in their shoes.

Doctors and allied healthcare workers who suggest that the family administer tough love should be asked: “Would you?” Remind them that the system may allow the seriously mentally ill to slip through the ever-widening cracks, but that families will fight not to let that happen.

About 15 years ago, a kind man visiting from England gave the Ontario Friends of Schizophrenics good advice. He was completely deaf and relayed his message using a sophisticated hearing aid. His son was working in Europe for the Common Market when he became psychotic. He was thrown into hospital and then abruptly released with little clothing. He then walked over the mountains in the middle of winter and was severely frostbitten.

The man said: “Don’t let professionals order you to let go. My son is alive because of my wife and me. Until professionals do what is humane for schizophrenics, you must be there for them.”  Later, his son went on to live a fairly independent life and was a contributing member of society despite his disability. His other son, a medical doctor, told him that he must begin to educate the professionals and that was what he then did. And so must you.  Schizophrenia is no myth. It is real. Let any family or patient show you.


Read previous article in series, “Fads and Myths Cloud Understanding”          Read next article in series, “Give Disease’s Victims a Human Face”