Schizophrenia remains one of the most neglected and misunderstood illnesses in the world. It imposes a heavy toll on the individuals who experience it, their family members and caregivers. The high level of stigma, discrimination and superstitious beliefs associated with schizophrenia is an added burden to those with this illness.
Schizophrenia is a serious mental illness that affects how a person thinks, feels, and acts. Many people with schizophrenia find it difficult at times to tell the difference between real and imagined experiences, to think logically, to express feelings, or to behave appropriately.
Schizophrenia often develops in adolescence or early adulthood and affects approximately 26 million people worldwide.
People with schizophrenia experience a range of symptoms, usually hallucinations and delusions that make it difficult for them to judge reality. While there is no absolute cure for schizophrenia at the moment, effective treatments are available in the public and private health care delivery services in our country.
Early signs of Schizophrenia
• Sleep disturbance
• Appetite disturbance
• Marked unusual behaviour
• Feelings that are blunted (flat) or seem
incongruous (inconsistent) to others
• Speech that is difficult to follow
• Marked preoccupation with unusual ideas
• Ideas of reference – thinking unrelated things have a special meaning, i.e., people on TV talking to the person
• Persistent feelings of unreality
• Changes in the way things appear, sound or smell
One of the main reasons why schizophrenia has been considered as such a devastating illness is the fact that it usually first appears during the late teens or early twenties, at a time of life when the young person is finishing their education or entering the workforce, establishing their social network, and beginning to assume their independence as a young adult.
Any serious illness can severely disrupt this normal development, and it is this disruption rather than the symptoms of the illness alone that impacts the young person so severely that “living with schizophrenia” makes life miserable for those challenged with this illness. However, there are others too who “live” with schizophrenia. These are the family members and caregivers. The impact of schizophrenia on the mental health of family members and caregivers cannot be underestimated. The burden of schizophrenia also falls on them. The social stigma attached to schizophrenia, the discrimination experienced by the sufferers, and the difficulties in rehabilitation and social reintegration are also shared by the family.
Stigma and discrimination
Management of persons with schizophrenia has been very shameful in the past and is still so in many parts of the world and there have been dark periods in the history of humanity during which the mentally ill have been mistreated and ridiculed. Even today, in many parts of the world a great proportion of patients still do not receive treatment at all, in effect, dehumanising them from an individual to being an illness or worse a curse.
Is there hope?
Today, progress in the treatment of Schizophrenia no longer means that patients’ dreams and aspirations to lead a normal life need to be permanently put on hold. Having schizophrenia is no longer a lifelong curse. Recovery, to a large extent, is not only possible, but is a natural right of those diagnosed with the illness.
Take for instance, Visalatchi ( who wants her real name known ) twenty two years old, from Kuala Lumpur who was diagnosed with Schizophrenia when she was nineteen. She underwent a challenging period of grappling with her illness which brought immense suffering to her family as well. She then sought treatment at a government hospital in the Klang Valley. She is now functioning well and is on medication and periodic follow up with her psychiatrist . Visalatchi successfully runs her own bridal make-up business. She aspires to be an advocate for mental illness and has even written about it in a book “In my shoes” which was launched in Klang last year .
What can be done?
Blaming one another for the illness of a loved does not help .Neither should the facts of the severity of Schizophrenia lead to pessimism .Modern methods of treatment coupled with a change of attitude in society about mental illness have resulted in very impressive changes that have allowed “living with schizophrenia “to be a positive and productive experience for many people.
Helping a person with Schizophrenia
• Do not feel ashamed because someone in your family has it. It is a medical condition just like Diabetes or Hypertension
• Do not feel guilty or seek someone to blame. Schizophrenia is nobody’s fault.
• Educate yourself about your relatives’ condition. Learn more about his or her symptoms and early clues such as poor sleep and social withdrawal which indicate an impending relapse.
• Establish a daily routine for the person to follow.
• Encourage the person stay on the medication prescribed.
• Assure the person know that he or she is not facing the illness alone but has your support.
• Avoid harsh or direct criticism.
• Compliment on achieved goals without being too effusive in your praise.
• Caring for the person can be emotionally and physically exhausting. Take time for yourself.
Newer antipsychotic medication with minimal side effects have made significant recovery possible .Many more can live in the community leading normal everyday lives. The dynamic collaboration and synergism between consumers, caregivers, professional associations and society as a whole can make “Living with Schizophrenia “worth living.
Dr. Andrew Mohanraj 