The physical result of mesothelioma and asbestos disease are often all-too evident. People wracked with pain, coughing, unable to catch their breath. But what about the mental toll of this disease?
Perhaps one of the most interesting presentations at the recent Asbestos Awareness Day Conference in Detroit, at least to me, was that of Rebecca J. W. Cline, PhD, a senior scientist in Communication and Behavioral Oncology for the Karmanos Cancer Institute and Associate Professor of Family Medicine at Wayne State University.
Dr. Cline recently conducted a community-based focus group investigation in Libby, Montana, on psychosocial issues related to vermiculite/asbestos exposure. She also is currently leading a related population-based survey investigating that community.
She describes asbestos related disease as a “slow-motion technological disaster,” in which community and social responses have a great deal to do with how people fare, mentally and socially.
The basic definition of a technological disaster is a “catastrophic event caused by humans that results in the toxic contamination of the environment.” This includes asbestos contamination, as in Libby, resulting from decades of vermiculite mining, hence “slow moving,” as well as things like oil spills, which can devastate an area fairly quickly.
Libby is the epicenter of what Dr. Cline calls “the worst environmental disaster in the United States,” with multiple generations affected. She examined in particular how stigma associated with asbestos disease can have an impact on what people do.
Dr. Cline said there are two possible responses to technological disaster – the emergence of an altruistic community, or a community in conflict. The latter, she said, is common where there is human culpability, and it was the result in Libby.
The Libby study, conducted in 2006, included focus groups and some individual interviews with adults who lived and worked in the Libby area for at least the past five years. Interview subjects included people with connections to the mine, people with no connections to the mine, people affected by asbestos disease personally, people with family affected by the disease, and people with no disease in family or person.
She found that people fell into three categories – early believers, those who immediately understood the connection of vermiculite to what was happening to the town; late believers, those who initially resisted the idea that the mine made people sick; and those in denial or conflicted, who still did not or would not believe the mine was responsible.
Dr. Cline found that there was a great deal of stigma attached to asbestos-related disease, which created a barrier to social support. People with mesothelioma or other asbestos-related diseases were often afraid to talk about it, she said, even to close friends.
She said that the stigma came from a variety of sources. Conflicts included concerns about the economic disaster that the loss of the mine signified for the town, for which it was the main industry and source of jobs and security. People feared that if the mine were blamed for illness and deaths in the community there would be a decline in property values, loss of jobs, and a lost way of life.
As a part or a result of that, conflict also grew from a concern about what was the truth. There was a suspicion among neighbors that people claiming illnesses were phony, money-grubbing, greedy or opportunistic, making up illnesses to get a part of a financial settlement from the mining company.
People suffering from asbestos disease personally or within their family were afraid to talk about it out of fear that they would be ostracized and shunned by their neighbors and their community.
Dr. Cline told the story of two women, best friends for years, who bumped into each other in the Center for Asbestos Related Disease, which had been established in Libby to test, diagnose and treat patients. “What are you doing here?” one whispered. “I have the asbestos,” the other whispered back. “Me too,” came the whispered response. Best friends, but afraid at the core to admit to having asbestos disease.
On top of this, people who are ill or whose family members are ill fear the health and medical disaster itself, which was already upon them. They said they felt a lack of hope for survival, not just for themselves or their immediate family, but for generations.
Some of those in denial, or conflicted, still refuse to be tested for asbestos disease. They don’t want to know, Dr. Cline says, or they do not believe the mine could harm them.
There appears to be one universal in Libby.
“Across the groups, people felt like the community as a whole had been stigmatized, that everyone ‘knew about Libby’ and it had been given a bad reputation,” Dr. Cline said.
In addition to the physical toll, the mental toll of asbestos disease in Libby has been incalculable, she said.