Helping people live with scars

By REBECCA WALSH health reporter




Liz once imagined spending the rest of her life tucked away inside her Hamilton house.

Surgery to remove a cancerous tumour behind her right eye left the mother of five with one eye and a patched hole.

"When I first saw myself I was stunned. I just couldn't believe what I looked like. There are no words to describe it."

People would stare, someone called her a freak, others avoided or ignored her.

"It made me feel so uncomfortable I just wanted to run," the 53-year-old remembers.

For people whose appearance is changed by burns, surgery or accidents, learning to live with the aftermath can be a major challenge. Little is known about the long-term effects on their psychological well-being or social relationships.

This month Auckland University, which is planning research on how disfigurement affects people's lives, is hosting a British psychologist specialising in the area.

Dr Diana Harcourt, deputy director of the Centre for Appearance Research at the University of the West of England, said in a world where appearance was so emphasised, disfigurement or "visible difference" could have hugely negative consequences.

A study she made of 650 people at out-patient clinics because of some form of disfigurement - from birth marks to a cleft lip or burns - found up to half were worried or very worried about their appearance. They avoided social situations, or reported being called names or avoided other people.

"People [patients] reported being stared at and that other people would feel they could ask [them] quite personal questions."

For the other half of people surveyed, their disfigurement was not a major issue, she said.

British research shows about 670 people per 100,000 have some form of disfigurement (comparative figures for New Zealand are not available).

Dr Harcourt said studies, including her research, had found it was not the severity of the disfigurement that made the difference but an individual's perception of it. Factors such as the extent to which they believed other people noticed the disfigurement and how important appearance was to their sense of who they were made a difference.

There was no consensus on whether it affected men and women differently, but facial disfigurement, which was harder to hide, could be more of an issue. Sometimes children, who had grown up disfigured and had a supportive family network, coped better than someone who had to adjust to losing their looks.

Medical and surgical treatments could reduce the impact, but did not patch up the psychological scars.

One of the biggest factors was strong social skills. If people are able to engage in social conversation other people will see past their appearance.

Dr Jeanne Reeve, of the School of Population Health at Auckland University, said research was needed to find out whether the issues were similar here and to look at educational initiatives and the type of support needed for people to successfully resume their lives.

Thirteen years after her surgery, people still stare at Liz but she has become accustomed to it and looks back. She credits a supportive family and friends for helping her back into the world.

The years working as a relief teacher at primary schools made her value the children's direct questions about her appearance. And although she used to want to blend into the crowd, she now appreciates it when people she meets ask if she is happy to to talk about how she came to lose an eye. It is better than being ignored.

FACING PROBLEMS

A British study of 650 people attending out-patient clinics because of some form of disfigurement found up to half were worried or very worried about their appearance.

Other British research shows about 670 people in 100,000 have some form of disfigurement.