The unbearable burden of being mentally ill

Why me? This emerges as the dominant theme among parents of children with special needs.

KARACHI: Why me? This emerged as the dominant theme among parents of children with special needs when asked about their role as primary caregivers.

Parenting on its own can be a tough job and parenting a child with limited cognitive development is significantly more challenging. Of course there are some parents who are quick to move past the denial and forward with the responsibilities of providing for their children but in such situations acceptance can extend beyond just one person’s understanding.

“While some mothers come out of denial very quickly then they face resistance from not just their family members but also in some cases their husband,” says Sadaf Shahid, a speech therapist, adding that, “In fact, often the child is not given the same privileges as their siblings.”

According to psychiatrists, traditionally the “burden of care” for a mentally ill child or person falls on the single female(s) of the family or the daughter-in-law. The reason for this is there are no real institutions to help provide care or train individuals who are caring for people with such illnesses thus creating a dangerous lack of professional understanding of the psychological issues at stake. This also adds a financial burden on the person. And when society at large provides no support and even less understanding, the stress can be immense on a caregiver.

Dr Murad Moosa Khan is a consultant psychiatrist and chair at the Department of Psychiatry at the Aga Khan University (AKU). Speaking at a seminar organised by AKU he said, “Between 40 to 50 per cent of the nation is affected by some minor or major mental illness (MI).” Minor or common illnesses constitute up to 30 per cent and include depression and anxiety whereas major or psychosomatic disorders include illnesses such as schizophrenia, brain damage and resistant depression.

With such eye-opening statistics it is sad to see that mental illness remains a “stigma or mark of shame”. This is also one of the reasons behind the neglect of these individuals even though according to a 2007 study published in the Lancet medical journal, mental illness makes up about 14 per cent of global disease, more than cancer or heart disease.

“The US versus THEM attitude of social exclusion adds to the myths and issues that are present surrounding mental illness,” explains Dr Haider Ali Naqvi, a consultant psychiatrist. “Society has common names for people with illnesses - loony, nutcase, charia, pagal and psycho. This is then added by their general behaviour and attitude towards those are different,” he added.

Interestingly Dr Naqvi added that people, even those who are well educated, seem to know more about physical illnesses than psychological ones. In fact when they do witness someone with a mental disorder they resort to black magic and prefer to go to quacks than trained professionals for help.

Not all mental illnesses are biological or genetic, some stem from environmental or lifestyle choices e.g. financial woes or drug and alcohol abuse causing - severe - depression, respectively. Doctors attribute a very high risk of mental illness where drug and alcohol abuse is involved. Drug Free Pakistan 2008 statistics show at least five million people in the country are drug users. However, a bigger problem now is the easy access and availability of alcohol in the country. Excessive use affects not only the drinker biologically with liver damage but the family emotionally as it may have to suffer violent behaviour. “I cancelled my wedding with only a month left,” said Sara (not her real name). “My fiancée used to drink a lot. At first I didn’t pay much attention to his aggressive demeanour but then one day he pushed me during an argument and I fell down the stairs and got hurt pretty badly.” That was the day Sara decided she could not deal with her fiancée’s illness any more. “He wasn’t a bad person, it was just when he drank, he lost control of himself.” Dealing with an alcoholic is a full-time job, especially when the person is “totally dependent on the alcohol and in absolute denial.”

Experts say the most important thing is self-awareness and communication, both of which do not come easy and that is when a strong, supportive family or friend is needed the most.

Published in The Express Tribune, October 12^th, 2010.