The former world traveler, who says she loved her job, doesn’t work any more. She sleeps more than twelve hours a day and stays inside a great deal.
For Martin, 43, the world changed in 2002, a couple years after a mold took over the basement of the Hesston theater building. She became increasingly sensitive to her “allergies,” and eventually disabled. After several months, and many rounds of doctor visits, she received a diagnosis: Multiple Chemical Sensitivity (MCS).
- Avoid using perfume, cologne, breath mints, cough drops, gum, and scented personal care products while around persons with MCS.
- Don't apply lipstick, hand lotion, or perfume in the sanctuary or classroom.
- Avoid snuffing out candles during a service. Wait until sensitive people can leave.
- Eliminate the use of air "freshener" sprays, incense, and fragrance-emitting devices.
- Use least toxic, natural, and unscented cleaning products in restrooms.
- Declare a scent free zone in a room with a window into the sanctuary.
For Martin and others with MCS, the world is a toxic place. Paint, glue, gasoline fumes, perfume, air freshener and a host of other seemingly-innocuous chemicals are dangerous to an overloaded protection system. While most people can deal with the bombardment of everyday substances, those with MCS can be triggered by the slightest of things, causing a variety of reactions that could include anaphylactic shock, nausea and vomiting, asthma and anxiety.
The diagnosis of MCS is a controversial one. Few medical authorities and insurance companies recognize it, though it is recognized by the government as a disability. Many dismiss the syndrome as psychosomatic or not clearly defined enough to be real.
While it is true that there is no defined diagnostic battery of tests for MCS, few would deny that those involved suffer.
For Peter Neufeld, a retired pastor from Hutchinson, Kan., MCS has meant not watching TV, listening to the radio, or seeing his grandchildren in school plays. Neufeld, 77, said he is allergic to “electricity, perfume, deodorant, after shave, scented soaps, hair perms and anything containing formaldehyde.” He said he developed MCS about six years ago, when “I noticed foul smells and burning lips and mouth when I encountered car exhausts in town, and wood smoke and other chemicals.”
Roberta Krehbiel, 69, of Donnellson, Iowa, has had MCS for 22 years. Doctors originally thought she might have multiple sclerosis, due to the variety of muscular and neurological difficulties she was having. In the summer of 1985, she was referred to a clinical ecologist in Chicago. (Clinical ecology, according to one website, is “the art and science of adapting your environment to create a safe, healthy space.”)
Krehbiel said, “Our insurance wasn’t approving the hospitalization in a totally controlled environmental unit, so we borrowed most of the $15,000 necessary to be admitted. During that 21-day stay, I was amazed as to what caused many adverse reactions.”
Upon diagnosis of MCS, most people find themselves in a constant state of adjustment to avoid whatever triggers symptoms. Krehbiel describes sitting on sheepskin to avoid wood finishes and synthetic fabrics, stopping use of shampoo, detergent and deodorant (substituting vinegar and baking soda), and avoiding metal utensils, cooking pots and pans. She said, however, that the people around her have been supportive.
“At church, I sat in the choir with wonderful people who were willing to quit using perfumes, aftershaves, deodorants and wore cotton clothing,” she said. “Oh, how I appreciated their willingness to help, as well as my loving and supportive husband who never wavered throughout almost 50 years of marriage.”
Likewise, Neufeld said he can only visit with family who are willing to adapt, or can sit outdoors with him in good weather. He also has appreciated church support, he said. “It is helpful to have the pastors come to visit, also deacons and other church members. Many church members have assured me of their prayers. Our church has a good library and I have read many of their books. The church has also been very supportive of my wife, Onalee.”
Pat Becker, 65, of North Newton, Kan., said she and her husband, Larry, don’t have many people over since she was diagnosed in 1992. She also misses seeing her grandchildren at school and sports events. She described avoiding certain aisles at the store, making special arrangements while traveling, and airing out magazines before reading them due to the ink smell.
But, Pat said, since she can’t serve on church committees, she’s found a different way to serve God. “For the past 8 years I have been doing a prayer ministry,” she said. “I have 38 family members. Each of them is assigned a calendar day.”
[Editor’s note: Pat Becker died in 2008, a year after this article was written. Following her diagnosis with MCS in 1992, Pat worked to build awareness in the church and to find ways to support others facing the challenge of MCS.]
While Martin’s specialists agree that her sensitivity was brought on by mold, the others can’t say what might have caused their illness. But they’ve all found ways to deal and to live life as best they can. Martin believes that awareness should be raised within the church to keep toxic chemicals out and rid the stigma of MCS being “all in your head.”
Becker said, “I know God is in control of my life and He is with me. He has a reason for my illness. God gives me a special kind of peace when I am homebound.”
Neufeld admits that his faith is sometimes tested, but that deep down, “I know from Scripture that God loves me and helps and sustains me 24 hours at a time.”
And Krehbiel dreams of a network for people with MCS to communicate with and support each other, as well as “normal” folks to help with advocacy. “We need dedicated people who will help us present our needs to churches, conferences, and especially to insurance companies as most of our treatments are not presently covered.”
More ADNet resources on MCS
This article is reprinted from ADN’s Connections newsletter, February 2007.