On the 6th of February, 2004, the President of India, APJ Abdul Kalam, launched a nationwide campaign in Chennai to remove the stigma and discrimination associated with mental illness. He was addressing the 20th Anniversary of the Schizophrenia Research Foundation (SCARF), the country’s leading NGO research facility in the field. Schizophrenia is among the ten most disabling conditions that affect mankind. Of the 30 million mentally ill Indians, over seven million suffer from schizophrenia, the most disabling of all psychiatric disorders.

Dr.Kalam emphasised the need for a greater understanding of the disease. Activists and mental health professionals welcomed this campaign, stressing that even the media failed to distinguish between different mental health conditions. In his newly released book "The Splintered Mind" (Penguin India Books), author and counsellor Dr.Vijay Nagaswamy comments on the tendency to generalise and label mental health under the umbrella of ‘lunacy’ or ‘madness’. The media uses the term ‘schizo’ or ‘schizophrenic’ to label dichotomous descriptions adding to the prevailing confusion/misunderstanding. A wider understanding of schizophrenia is needed.

In a related event, Dr. Judith Jaeger (well renowned in the United States for her work in cognitive, affective and volitional impairments in psychiatric disorders) was recently Chennai to attend an international conference organized by SCARF. Dr.Jaeger is the Director and Associate Professor of Psychiatry, Albert Einstein College of Medicine, and consultant with the Centre for Neuropsychiatric Outcome and Rehabilitation Research (Hillside Hospital, New York). She spoke to Lalitha Sridhar at length about schizophrenia.

Could you trace the roots of schizophrenia and how it manifests itself?

The problem is fairly universal in all cultures and countries, across ethnic groups. We don’t know why but it affects about 0.5-1% of the population. Schizophrenia is a disease of the brain and, unfortunately, we don’t understand what’s wrong with the brain as such. We are now just beginning to get some idea. It’s probably genetic in part but most researchers believe it’s largely inborn or rather, what’s inborn is the internal risk for it.

Usually, it starts when a person is between 16 and 20 years of age, sometimes later, sometimes a little earlier, but that’s the most common. It begins mostly with social isolation but that varies. There are some people for whom it begins as an acute onset, while others have a very gradual onset. The gradual onset will evolve very slowly, like for example, the person will become socially isolated, avoid people, stay in his room a lot, not do what is expected of him but likes to be alone. After a while, this behaviour may get to be a little bit peculiar - they begin muttering to themselves and we begin to suspect that they are hearing voices, and becoming psychotic.

Other people get sick very, very rapidly. They could be going to college or university or they could be very talented people - like a musician or a scientist. People with such rapid onset are actually so capable and so high functioning that they are able to hide the early manifestation of the disease in a way that these are not available or visible to people. In many such cases, the answer appears to be much more acute, where really in a matter of weeks, they become absolutely psychotic.

Are there any mitigating factors, something that sets off or triggers the onset of schizophrenia?

Many people think that, but the problem with researching is, to answer the question objectively, you have to consider this - when a person begins to have symptoms, one of the effects is that they behave in a way that is stress inducing. You are not doing the things that are expected of you. If you were to specifically look at the impact on women, let’s say in the Indian environment in a traditional home, the woman is expected to do a certain maintenance of the home environment around her and she begins to neglect it. Now, under ordinary circumstances, you know how it is when you start neglecting your job - it starts catching up with you. You have created an increase of stress. Healthy people collapse for a few days when they are tired and work piles up on the desk. They know it is there and they know it is facing them and they can rally themselves to catch up. But in schizophrenics, you are falling back in your responsibilities because you are psychotic. The increase of stress that is associated with the accumulated responsibilities that have been neglected can appear, to an outsider, to be outside stressors. What we don’t appreciate is the degree to which these ‘outside stressors’ are created by the early visitation of the illness. So, yes, there are many scientists who believe that there is a contribution of stress in the environment but I think it is a very difficult thing to study for sure.

Also, there are some studies that indicate the relevance of physiological stress combined with disposition. There is also a finding that is replicated a lot though not universally. People with schizophrenia have a slight preponderance to being born in the months during which the second trimester of their own development is ongoing. During the mother’s pregnancy, if the woman gets influenza, the baby could be at risk. For example, there were studies done in Scandinavia, where the record-keeping is very good. They went back to hospital records and they showed that schizophrenia is significantly more prevalent not only in the winter months but winter months in the years when there were influenza epidemics. So there is this hint that in addition to the genetic predisposition, maybe stress to the foetus during the second trimester of pregnancy, when areas in the brain may be developing, could be important in the cognitive functions of the brain of a person suffering from schizophrenia.

Families are handicapped by the refusal of the patient to undergo treatment. Please comment.

There is this hint that in addition to the genetic predisposition, maybe stress to the foetus during the second trimester of pregnancy, when areas in the brain may be developing, could be an important factor.
This is a very difficult situation. As regarding the patient, everything has to be tried - persuasion, cajoling, tricking - families do the best they can. The problem is that very often, in the early stages of the illness, the person has no insight into the fact that he or she is ill. Their symptoms themselves prevent them from going for help. For example, you hear voices but very often these voices are commenting on you and your behaviour. They may be saying that your mother is trying to trick you or your doctor is trying to fool you. So now you become frightened and you don’t know whether to believe these voices or what’s outside. We, on the outside, don’t know unless the patient shares it with us, what it is that these voices are telling them. So they are really struggling to form or judge reality.

Another particular symptom, especially seen in the early stages of the disease although they are vulnerable through out, is delusions. Hallucinations are sensory experiences where there is no stimulus like, for instance, hearing a voice where there is no voice. Delusions are false beliefs for which there is no rational explanation, beliefs that any healthy person, if he or she engages in a logical process of deduction, will realize they cannot be true. When you have paranoid delusions you believe that people around you are trying to do things to you. They run the gamut - this is where there are cultural differences but with technology, the instances of those who have delusions about how ‘someone has implanted a chip that can read my mind’ are definitely higher. But it could be anything - it could be that someone in your house is trying to poison your food. Very commonly, when a person has paranoid delusions, they also have grandiose delusions - so someone is trying to poison me because I have this secret to nuclear technology. It can be mixed - this grandiose belief that they have this special knowledge or belief, and because of that, everyone is after them.

How, then, does one get the patient to the doctor?

Sometimes, the symptoms cause sufficient suffering that you can appeal to the suffering and say, you know, you are tortured and I can see that you are in agony - doctors can really help you, this suffering on your part is not necessary. An important issue in trying to get people to come forward is to try and get them to take care of themselves. What is it that the patients think is going on? If they believe that it is a medical illness, then going to the doctor is the right thing to do. If they believe that they don’t have a medical situation but somebody is after them because they have the secret to nuclear technology, then expecting them to be convinced to go to the doctor makes no sense at all. So, that’s why we are at some disadvantage. There are no hard and fast rules. We must simply keep trying.

What is the prognosis for recovery?

30% of the patients recover fully after a single episode. There is some debate that they may not be schizophrenic but may actually be suffering from a temporary, one-time psychosis caused by, say, sleep deprivation or viral attacks. A third fluctuate between better and worse. 20-30% are profoundly disabled and don’t get better. A small percentage are hospitalized for life. These are not absolute groups, some overlap is indicated. Fortunately, with modern drugs, a great measure of relief has been achieved.