While this study specifically focused on families dealing with asbestos-related disease, I think survivors will see great parallels in the findings Heather Orom, PhD (assistant professor at the University of Buffalo School of Public Health and Health Professions and lead author on the paper) calls "counterintuitive."
"The casual observer might assume that when people become seriously ill and there are fatalities, that families would come together and support one another," Orom says. "But our research shows that often times, the opposite happens..."
"We found that the people in these situations can be victimized twice," Orom continues. "They become ill and then may be stigmatized because some members of the community view illness claims as lacking credibility, as baseless attempts to get compensation that tarnish the reputation of the town."
According to Orom, what typically occurs is that with the news of contamination, properties are devalued and businesses start leaving the area. "Suddenly, you've got two disasters: an economic disaster and a medical disaster," she says. "It's not surprising that some families decide, 'let's stop talking about it.' Those who continue to bring it up are then labeled troublemakers. Those who are sick and are seen with their oxygen also get labeled. So, many people, especially those with symptoms, start to isolate themselves at home and that affects how and if they discuss their illness with family members." Orom adds that this behavior could prevent people from seeking the medical or psychological help they need; it also could prevent them from discussing important measures that other family members should take, such as screening to find out if they, too, have the disease.
..."There is a reason why people don't like to discuss illness in general, anyway," says Orom. "With an environmental disaster, there is an additional layer creating a propensity for silence. In our focus groups, we saw instances where families rejected the legitimacy of the illness and estranged the person who was ill."