by Pamela Reed Gibson, Ph.D.
James Madison University
Originally part of an article named 'Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living'.
It is almost impossible to have any semblance of a "normal" life if you can't go anywhere. Sadly, people with MCS are often cut off from both people and places. Personal relationships with both family and friends are affected. The inaccessibility of public resources leaves people unable to shop, go to the library, use the park, vote, attend public meetings or religious functions, pursue hobbies, education, or entertainment, or at times even walk down the street.
ACCESS TO PEOPLE
Maintaining relationships with both family and friends poses tremendous challenges given the need to avoid the products of industrial culture that most people depend upon. Constructive relationships with partners, children, extended family members, and friends depend upon the compassion and flexibility of others to make accommodations for the person with MCS. However, many do not understand or deliver the needed changes and/or support that is so sorely needed.
Sensitivities can be devastating to some relationships. In my research, most people (80%) in romantic relationships felt that their partners were supportive. But about a third had suffered a romantic break-up since developing MCS, and three quarters of these said that the MCS had contributed to the break-up. Some people had partners who didn't even believe that their sensitivities were real. Building any kind of intimate relationship on such a foundation is almost impossible.
Couples may need to be seen together and offered some education about sensitivities in order to legitimize the condition if there is a disbelieving spouse. Partners need strategies for helping their spouse with MCS cope, for covering tasks that the person with MCS cannot carry out, and support in making difficult adjustments that may involve multiple losses. But most important, they need help to understand that their partner has a disability that is not voluntary, and that demands major efforts and adjustments.
Even if a relationship is a positive one, MCS is a severe stressor on the partner. Activities change, finances are strained, workload for the healthy partner increases, and in some cases family planning is affected. For example, one quarter of the 245 women in my life impact study did not have children. MCS was related to the decision not to have children for half of these women. These women felt that their health was not optimal for carrying a child, that medical offices were inaccessible to them, that they were too poor to afford a child due to their health, and that their child might inherit MCS.
Parents with MCS may have a very difficult time doing the traditional activities of parenting such as attending school functions, taking their children to community activities, and allowing other children into their homes. I believe that they can still parent where it counts, but that major adjustments need to be made in navigating their child's relationship to the outer world with the well parent performing many of the community duties. It is very important for all family members to receive education about the sensitivities and to have some guidance regarding strategies for accommodating their family member. For example, adolescent children need guidelines for what they can tell friends who come over ways to ask them to be free of fragrance, fabric softener, mothball fumes, and other incitants.
I asked people with MCS how they felt treated by extended family members. Many reported feeling painfully isolated from families, especially in instances where family members had been asked to be chemical free. Respondents said that their families did not understand the nature of their sensitivities (15%), relatives would not refrain from wearing perfume (12%), and that family members did not believe that the respondent had a true physical illness (7%). A few people were prohibited from discussing their sensitivities in the home, excluded from family get-togethers, seen as malingerers or hypochondriacs, verbally abused, or made fun of. On the other hand some described very loving relationships that did accommodate their disability.
Having friendships and community connections without access to buildings and facilities is next to impossible. Community access is so limited for some people with sensitivities that they cannot use stores, parks, libraries, or other public or private establishments. Some people are only able to get food by asking health food store workers to gather items and bring then outside for purchase.
By the time a person comes to you for help, he or she may be seriously despairing due to isolation. Any contact with other people that can be salvaged will be very important. It might take a tremendous effort on your part to get the person to identify something that they can do to increase their contact with others. And the sicker the person is, the less energy she or he has to put into such efforts. If you add that no matter how well the person plans, there is a likelihood of getting sick from exposure on any outing, the difficulty of maintaining community contact is apparent. There is a terrible sadness that comes from a lack of friendships or social support. Abuse from others who do not understand sensitivities may complicate the situation and cause a sense of learned helplessness on the part of the person who feels that relationships are just no longer possible. Serious depression can result from the isolation, and despair from missing the part of self that is relational.
However, I think that it is important for people to know that there are some members of society who do understand that industrial capitalism has harmed people's health, and that some people just need to live differently.
ACCESS TO PLACES
When persons are unable to work, further their education, or enter public buildings, serious quality of life issues are raised. For the MCS population, merely performing errands or participating in environments that others take for granted endangers health. Lack of access to public spaces means that these places are not really public. Although paid for with public funds, they exist for those tolerant enough of toxics and mobile enough in body to make use of them. At this point in time, people with MCS are essentially an invisible population due to the lack of a paradigm for chemically induced illness. The invisibility in public places probably helps to create a vicious cycle in terms of the lack of change or accommodation in regard to these areas.
Perfume is a major toxic that renders public spaces inaccessible for many. In my Life Impact study, almost half of the participants were unable to access any public areas in which perfume was likely to be encountered. The cumulative effects of perfume, exhausts, pesticides, paints, building materials, electromagnetic radiation, and other incitants left 8% of the sample totally housebound at the time of the study.
All of the following public venues and spaces are problematic for many with MCS:
Public parks are not accessible due to pesticide and herbicide use, and others' cooking fuels.
Any public meetings including community meetings and voting are problematic due to fragrance, petrochemical heating systems, cleaners, and pesticides.
Children's school activities are inaccessible to the parent with MCS due to contamination of school air with pesticides, cleaners, construction materials, carpet, petrochemical heating, and fragrance.
Merchants including food stores are not accessible due to fragrance, heating systems, pesticides, and offgassing of contaminants in merchandise such as vinyl.
Offices of health providers have as many toxics as any other public buildings rendering them unusable by those with MCS. Fragrance and pesticide applications are commonplace in physicians' offices, even though pesticides are often hormone disrupters and associated with many forms of cancer including breast cancer and childhood brain cancer.
Street fairs and carnivals are entertainment to many people, but due to fragrance, pesticides, and propane powered cooking and carnival rides, completely inaccessible to people with MCS.
Libraries also may be problematic for people with MCS due to indoor air quality.
Public transportation is affordable transport for some people, but for those with MCS it means exposures to fragrance, petrochemical fumes, and possible pesticides.
Airplanes subject people to fragrance, recycled cabin air, and pesticides (now included in the paint used in the cabin).
Religious activities including church, synagogue, or mosque worship services are problematic because of indoor air quality problems, and most important, fragrance. Many people in my studies have lamented the loss of their religious community due to the community's refusal to limit fragrance at worship.
- Help people identify any potentially supportive others who could be educated about their condition and possibly provide some companionship.
- Help people brainstorm about any activities they could be involved in with some prior planning, such as outdoor activities, gatherings that are fragrance- free.
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