by Mary Davis
Ms. Davis is a free-lance writer who focuses primarily on environmental issues.
This article appeared in the Christian Century, April 2, 1986, p. 325. Copyright by the Christian Century Foundation and used by permission. Current articles and subscription information can be found at www.christiancentury.org. This material was prepared for Religion Online by Ted & Winnie Brock.
More and more people suffer from the little understood immune system dysregulation. For some, the health hazard of attending a worship service in a sanctuary may put everything associated with the church under a cloud. If the church family can support and encourage the chemically sensitive and can help them find ways to serve, it will make a human investment that will be well repaid.
Aids is not the only illness that seriously damages the immune system. An increasing number of individuals suffer from immune system dysregulation, also known as chemical sensitivity or ecologic illness. Since this problem cannot be transmitted from one person to another, its victims, unlike those of AIDS, are not deliberately ostracized by society. However, their illness may turn them into exiles, as their reactions to substances in common use force them to alter their lives dramatically.
Chemical-sensitive individuals and their families, have needs that churches can meet. Unfortunately the staff and congregation often fail to help, simply because they do not understand the nature of the illness.
People with immune system dysregulation suffer harmful reactions to a range of synthetic chemicals and common allergens and, like AIDS victims, have a reduced ability to fight infection. Symptoms in the. presence of offending substances include asthma, depression and irregular heartbeat. The illness is caused by stress from exposure to infectious diseases or toxic chemicals. Pesticides are frequently the culprit.
The most effective treatment requires victims to avoid the substances to which they are sensitive. This allows the immune system to rest and rebuild its strength. Recovery is seldom so complete, however, that former patients can tolerate heavy or continuous doses of the substances to which they were once highly sensitive. Furthermore, the illness could worsen. If patients do not practice avoidance, the immune system becomes progressively weaker. People who have been sensitive to only, one or two substances may suddenly find themselves unable to tolerate many others.
The necessity for avoidance causes a host of problems for people with immune system dysregulation. Sensitivities, like the reactions themselves, vary from individual to individual, but patients typically must stay away from such common substances as plastics, polyesters, detergents, perfumes, particle board, smoke and automobile exhausts. Further more, they may appear well, until a reaction occurs. In fact, many look well even while suffering a reaction. Such people experience the cerebral allergy form of the disorder. Their symptoms include pressure pains in the head, confusion and inability to concentrate.
Since reactions may be invisible and have no obvious link with the substances causing them, victims are haunted by the feeling that other people think they have simply become peculiar. Few people have heard of ecologic illness, and much about its nature awaits research. Some doctors argue that it doesn’t exist and tell patients that they are imagining their symptoms. If they have been harmed on the job, their employers will probably deny compensation. Few lawyers will defend with conviction the rights of the chemically sensitive. Family members often won’t accept the reality of the illness. Many victims are frequently admonished, "if you’d just forget about it, you’d get better."
Attitude can affect the course of the illness, but forgetting about it will not make the problem disappear. The chemically sensitive are in a sense physically handicapped, and what they need more than anything else is for others to accept this fact and cooperate by helping to provide a pure environment.
After the initial diagnosis. those who can afford extensive treatment go to a special hospital where their bodies are freed of contaminants and tested. They then establish for themselves the purest environment possible. This may be simply a room in their own home, an oasis cleaned of all triggering substances. If they are very ill, they are confined to the room. If their problem is more manageable, they use the room only for sleeping and occasional resting. Some people find themselves able to return to their former jobs; most are far more restricted, at least at first.
Concerned church members can help people with chemical sensitivity by determining their physical requirements. Many patients will gladly lend articles or books on the illness. This will relieve them of the burden of having to prove that their problem exists; they can rely on the written material to do so. It will also name the types of substances to which patients are sensitive. Telling a man that he should skip his after-shave or a woman that her perfume makes one ill is not a pleasant task. However, at some point patients must discuss their individual needs.
If a patient must stay in an oasis, concerned people need to find out whether visitors are welcome and, if so, what they need to avoid, bringing into the home. At the minimum, they should not smoke or wear any scented toiletries. For patients who can leave their homes, walks outdoors in areas away from traffic are a good way of getting together with friends. A short visit to another home or to an office may be possible; many patients can stay for a brief time in rooms that would make them unwell if they were there eight hours a day.
Unfortunately, most church sanctuaries are not easily visited, even for an hour on Sunday mornings. Many sanctuaries contain "indoor pollution" such as synthetic furnishings, carpeting and, in the case of new buildings, construction materials. During services the air tends to be filled also with the scent of powders, perfumes, hair sprays, deodorants and after-shave. Burning incense and candles adds to the problem. People only slightly sensitive may manage to attend. If so, they will appreciate the heating and cooling systems circulating a substantial portion of fresh air rather than simply recirculating stale air. Opening windows, when weather permits, is very helpful.
For people too ill to attend regular services, there are alternatives, including those regularly practiced for shut-ins. The church could pipe the service into a bare room elsewhere in the church building, or hold special services. Few churches have enough ill people to warrant such a program for only their own members, but an interdenominational arrangement may be feasible, at least in cities. Since 1983 the University United Methodist Church in Fort Worth has invited chemically sensitive persons to a weekly Bible study in the church’s uncarpeted solarium, where the six to ten participants sit on metal chairs at a distance from one another and the minister.
Chemical pesticides and chemical lawn treatments also present hazards to patients, although for briefer periods of time. Since herbicides and pesticides can make even well people ill, all parishioners could benefit from alternative ways of dealing with insects and weeds.
Whether or not the chemically sensitive can come to the church, the members and staff should keep in touch with them, for it is easy for them to fall away from the church altogether. The health hazard of attending a worship service in a sanctuary may put everything associated with the church under a cloud for them. Furthermore, the nature of the illness can cause them to question the church’s teachings about love and relationships. People with immune deficiency syndrome must at times keep at a physical distance from others and make requests that seem unreasonable and selfish; they may become irritable in reaction to physical stimuli. Knowing that they are not being lovable and having difficulty in sustaining warm relationships with others, they may ask an old question: Why does God wish us to do what he makes so difficult?
For many people with chemical sensitivity, moods are extremely affected by food and surroundings. In one day a person may feel deeply depressed while in a room with a gas-burning stove, become elated after eating ice cream, and explode in anger at a librarian, in reaction to a photocopy machine’s fumes. To such a person the mind and the emotions seem completely dependent on the physical world. What need is there for the spiritual, if one can feel renewed simply from eating chocolate? Furthermore, patients become acutely aware of social and environmental problems through their own attempts to avoid pollution. To them, their illness is part of a global degradation, including world hunger and contamination of the earth with radioactivity and toxic chemicals. At times they ask why a just and loving God would let people travel what appears to be a one-way path to destruction.
The illness’s strain is not experienced by the patient alone. Family members often need counseling and support. However, this should not contradict the advice of the patient’s physician. Well-meaning friends can impede the physician’s treatment by fueling the family’s suspicions that changes that the doctor has asked them to make are unnecessary, and this may delay their acceptance of their illness. It is more constructive to help the patient and family members to negotiate ways of implementing the doctor’s advice.
Having a chemically sensitive patient in the house causes tremendous problems for a family. If their house is small, the members have difficulty in providing even the minimum amount of pure space that the patient needs. Each might have to give up some seemingly harmless habits. For instance, a daughter might have to switch from her favorite shampoo, or a son might not be able to cook pancakes because of the smoke this makes. They may resent requests to abandon familiar ways, and even feel personally rejected. A husband is quite likely to think that his wife’s dislike of his shaving lotion is actually dislike of him.
Even more drastic changes may become necessary. Some patients need to change houses or geographic location. If they have been providing all or part of the family support and must give up their jobs, the family suffers an income cut while its expenses rise. Costs increase for basics like food, which should now be organically grown. Such stresses have led many cases of chemical sensitivity to divorce.
Indeed, their limitations are challenging. Some patients are so sensitive to the chemicals in ink that they cannot read a newspaper until it has been aired, write with a pen or typewriter, or handle photocopies. Almost all can use a phone, however. Thus they may call to check on elderly people living alone, become part of a crisis team to refer people to professionals who can help them, or take part in a network that informs citizens of pending legislation. The restrictions on work with special papers and ink may be overcome in part by pairing the patient with someone willing to type letters written in pencil and to make any necessary photocopies.
Encouragement to join or to form a group working on a particular issue may be helpful. Some volunteers find that they like working in a field which has no direct relation to their illness, as they do not want to be reminded of how serious chemical sensitivity can be; but others will want to work with consciousness-raising groups. One such organization is the Human Ecology Action League, which has chapters in many cities. This group organizes patients into a network that furthers the interests of immune deficiency syndrome patients and urges the creation of a cleaner environment for the general public.
A doctor working with the chemically sensitive wrote recently, "I don’t recall seeing anyone recover fully who did not have understanding and loving people around them." If the church family can support and encourage the chemically sensitive and can help them find ways to serve, it will make a human investment that will be well repaid.