When she was first diagnosed with the controversial multiple chemical sensitivity disorder, Mary Schaefer was unable to work at her renovated office. Forced to alter every aspect of her life to avoid the everyday chemicals that now make her ill, she has joined with other sufferers to push for understanding of the disease.
“Most people didn’t believe it,” Schaefer said of reactions to her condition. “And I have to admit, I would have been one of those people saying the same things.”
In June 2004, while working for an engineering publishing firm, Schaefer says she became ill after the workplace was renovated
“Within a matter of a couple months, I lost weight,” she recalled. “I went to doctors and they didn’t know what was wrong. I was getting sicker and sicker.”
Schaefer dropped 20 pounds before she was diagnosed with multiple chemical sensitivity. After being exposed to high levels of chemicals during her workplace’s renovation, Schaefer said she became sensitive to even low levels of other chemicals, and even some foods.
“Multiple chemical sensitivity is a multiple-system disease that results from unusually high-level exposure to a chemical or chemicals that renders the individual subsequently sensitive to other chemicals,” said Dr. Christine Oliver, an associate physician at Massachusetts General Hospital and assistant clinical professor of medicine at Harvard, who treats patients with MCS. The chemicals that bother the patient are “not necessarily the same chemicals that caused the problem in the first place.”
Schaefer took a three-month medical leave to be treated at an MCS clinic in Texas and returned to work, only to be forced to quit six months later as her health deteriorated again, she said. “It was a major loss,” she said. “I loved my career. I had to stay at home.”
Even at home, she said, common chemicals began to bother her.
Household cleaners, molds, city air and even treated fabrics affected Schaefer. Living in her own Melrose home became dangerous to her health, she said, despite receiving two hours of high-density oxygen daily to improve her breathing and sauna treatments to sweat chemicals out of her system.
In the end, she said, she had to tear up her home’s carpeting, remove paint cans from the basement and cover wood floors with aluminum foil to block polyeurothane from rising into the air.
“Even what seems like a simple task like going to the grocery store is not possible” for patients with the disorder, Oliver said.
Oliver said MCS first showed up on physicians’ radars in the 1980s, but not all doctors agree that chemical sensitivity is a real medical condition. “It’s a condition that is controversial. It has been controversial since it initially appeared on the scene,” she said, noting that there is no way to test for MCS, only to rule out all other possible ailments. “The medical community is divided on whether this exists or not.”
But for Schaefer and others who suffer from MCS, the disease is very real. In June 2005, Schaefer was forced to move out of the three-bedroom unit in the two-family home she owned, to a small town near Northampton, where she shares an apartment with a chemically sensitive roommate. She works as a personal assistant for another MCS patient.
“I’ve lost a lot of friends because they just don’t understand it,” she said.