How Lives Are Affected by MCS
With all the medical controversy about whether MCS is “real” or not, the people who suffer have been left to fend for themselves. People with MCS are falling through the cracks and becoming an “invisible” disabled minority whose lives are no longer compatible with any of our medical, educational, or social institutions. For some, the suffering is immense. Others, who are more mildly affected, are able to make minor or moderate changes that allow them to live more or less “normal” lives (Gibson, Cheavens, and Warren 1996).
The story of those who are falling through the cracks must be told for several reasons. First, it is important to label the suffering and thus raise awareness about this hidden minority in the hope of drawing support for those who are suffering. It also is important for higher functioning people with MCS to understand the importance of preserving their current level of functioning. Knowing that you may become totally disabled without effective chemical avoidance and proper self-care, can cut through your denial and may help you to take your condition more seriously.
Second, a commentary on our society has to be made when it permits a substantial portion of its people to become disabled from toxicants to preserve the economic status quo. This chapter discusses the many impacts on everyday life that result from having MCS, including the areas of work, finances, housing, family planning, public access, and quality of life issues.
Third, although it can be depressing to think about these issues, this introduction might be an excellent summary to share with therapists and with friends and family members who are trying to understand what you are up against.
Another point should be made about the impact MCS has on daily life: The research and reports on the difficulties of living with MCS are very real and, for some, are devastating. However, the summary statistics are just that—summaries of information from many people. The statistics do not predict anything about any particular person. There are many people with MCS who function well in spite of the condition and feel satisfied with their lives. They maintain relationships with friends and lovers, have satisfactory jobs, and live in safe houses. As you will see in chapter fourteen, some even believe that having MCS has contributed substantially to their personal and spiritual growth. Therefore, keep in mind when you read the information in this chapter that it does not necessarily predict anything about your present or future experience. Many of the issues discussed in this chapter are also relevant for people with EMS, although we did not ask about this issue in the life impact study.
What Happens When You Are
There is no aspect of life that is totally immune to the impact of environmental sensitivities. People with MCS report that it affects their work, finances, housing, physical access, social relationships, and future plans. The remainder of this chapter reviews these changes. (See chapter eleven for more on social relationships.)
On the Job
Depending on your level of chemical sensitivity, work is likely to be very affected when you develop MCS. People with mild or moderate sensitivities often can make minor adjustments and continue to work. As a rule, however, there is some stress involved in obtaining the needed accommodations in the workplace. Often, people who are very sensitive are unable (at least temporarily) to continue in their present jobs. This is especially true if the person was first injured in the workplace. In my research, more than half of those who reported an initial known exposure, which damaged their health, said that it occurred in the workplace. Less than one-third of Phase I participants were still working outside the home. Unfortunately, three-quarters of those who worked had to quit their jobs to avoid further chemical exposures.
For example, one woman who worked as an advertising consultant often had to conduct her business in office buildings, graphic arts departments, and printing plants. With the onset of MCS, she became reactive to “almost everything” she “ate, breathed, or touched.” Having to avoid the chemicals and electromagnetic fields in print shops and offices meant losing all of her clients. Her computer and electronic devices had to be removed from her home as well; the only electronic appliance she was able to tolerate was a very small, old black-and-white TV. All her attempts to keep working failed.
In another instance, a man went from working as a chemist with a large salary to being disabled, unable to work, homeless, powerless, and ostracized by his family. Fortunately, he did eventually find a safe apartment. Only about one-fifth of Phase I working participants worked under conditions they considered safe for their health.
Trying to avoid chemicals in the workplace can lead to increased stress in relationships with co-workers. They may not be cooperative when asked to discontinue using fragrances or other personal care products that are sources of difficulty for those with MCS. Eventually the consequences for the MCS worker are major, as they were for this woman:
“Working near smokers, perfume users, in moldy, dusty areas, and the refusal of everyone involved to understand or moderate behavior has determined my life course. [This has been] very unsatisfactory to me and has left me destitute financially. Limping along, struggling from exposure to exposure, from job to job, has created an insurmountable obstacle to my accomplishing what I wished I could carry out.”
—Sixty-two-year-old woman with MCS since childhood
Many respondents were devastated by the thought of giving up work in a culture that highly emphasizes “productivity.” One woman said:
“I have found it very difficult to hold up without the outside reinforcement that the working environment provided me. Without the reinforcement that I got at work, I began to feel resentful and even worthless.”
Consequently, some people pushed themselves far beyond what their bodies could endure, unable to accept the loss of employment. As one woman described:
“I was interviewing for new jobs and wondering at each interview how I was going to work in this particular building when my body was going into spasms. I was having trouble breathing, and I was having trouble tolerating the place for the hour or two of the interview. In today’s lingo, I still hadn’t ‘gotten it.’”
It seems that chemical injury can occur in almost any job context, although homemakers, clerical workers, students, teachers, nurses, and social workers were most heavily represented in my study. (See Appendix A for the occupations of Phase III participants at the time of chemical injury.)
The accommodations they obtained at work varied. Obtaining the necessary accommodations mostly depended upon the sensitivity of the employer. Some people received no help and were even ridiculed for asking. Others were allowed to work in safer parts of buildings, at off-hours, or partly at home. Some were even able to create ways to earn money at home. For example, one woman did childcare for children whose clothes were washed in safe soaps without fabric softener. Some started small businesses relating to MCS, such as consulting; or they made or sold useful products like masks, supplements, purifiers, or other chemically safe items.
Multiple chemical sensitivity has been described as a “rich person’s disease” because of the tremendous financial demands it places on people. This is certainly true for those with EMS as well. The need to avoid chemicals often means replacing clothing, furniture, bedding, even homes, as well as purchasing purifiers and nutritional supplements. Conventional medical care for MCS at this point is seldom described as helpful and often as downright harmful (see chapter six), and alternatives are often not covered by insurance (see chapter seven). So, for the sufferer, just as income may be declining, costs are escalating.
Income declines drastically for anyone who can no longer engage in full-time work. Although household annual income for my research sample averaged about $35,000, average personal income for participants was just a little more than poverty level (about $12,000). People suffered sharp declines in their income after losing jobs (average decline was over $17,000 in annual income) and much of their income after leaving work was from disability payments. People with partners who had good incomes suffered the least as they were able to stop work without completely devastating their finances. Others pushed themselves to keep working in spite of their illness because their families depended on them. One man described dragging himself to work to support his family, and spending virtually all of his off time recovering from exposures. Some people were caught in a downward financial spiral and were even afraid of becoming homeless. One woman lamented, “It has been very hard on my children. They cannot understand why we don’t have what we used to when I worked or why we’ve lost our car, cable TV, and next will be the telephone.”
Those who became sensitized later in life seemed to suffer less financial devastation because they had worked for a time and accrued some savings. One woman explained:
“I came down with MCS later in life so we were able to live a great lifestyle most of our married life. For this I am grateful—I feel I missed very little and am not terribly discontented staying home. We have a lovely home, and more than adequate friends—good friends. Although once in a while I feel sad to have [MCS]. Our HEAL support group has been a lifesaver.”
People who are chemically injured while young never have a chance to build up a financial cushion, and thus are hit very hard. It is important for those with MCS to consider this information when planning for their future. For example, the $10,000 you may spend on a new therapy must be considered in the context of your overall financial health. Consider whether you have a large enough nest egg to experiment so that you won’t be financially devastated if the therapy doesn’t work.
People try to avoid chemical exposures by replacing household items, such as carpets, formaldehyde board, plastics, and other items. But many are unable to afford these replacements. Consequently, some people reported either continuing to live in unsafe conditions, or spending their life savings redoing their homes and purchasing air purifiers or other necessities. People spent an average of $28,000 to clean up their homes, and only two-fifths were living in homes rated as safe. Some respondents reported being unable to tolerate any traditional housing due to chemicals used in construction, and they lived in very unusual conditions.
For example, one respondent had lived in her horse trailer for a year. Others described being homeless or living in their cars, in RVs, in one purified room in their house, or in tents. Many did stints on their friends’ porches or in the homes of their parents. In Phase II, two-thirds of the participants had lived in highly unusual conditions at some point to avoid chemical exposures. It seems MCS brings out the survival instinct and forces one to be unusually resourceful.
“I live in a tent all summer (May to November). I can tolerate [temperatures] to twenty degrees, so [I] stay as long as possible. In winter, I have [a] room that only has a bed, wood floors, and no heat for my safe room.”
—Forty-seven-year-old man with MCS for five years
Ten-year-old Arthur Majester wrote about what it was like for him after his mother developed MCS and they had to live with friends for a year while she attempted to recover enough to find and test housing:
“Have you ever wondered what it would be like to be homeless? My mom bought a house in East Lansing, so I could go to Pinecrest Elementary School. The second day we lived in the house she went to the hospital. The doctors told her she was allergic to the house and could not return. The house had mold. You couldn’t smell it; the house was new. But it was hidden behind the walls.
We lived with a Chinese family that were friends of ours. They were really nice and we learned a lot about their culture, holidays, and food. We ate Chinese food every night, which I didn’t always like. They are very nice people, to let my mom and I live with them for a year. I liked playing with their dog too.
My mom went to many apartments and houses in that year before she could find us a house she didn’t get sick in. After living in the house with the mold my mom became allergic and sensitive to mold, but also chemicals. This made it hard to find a home. New carpet and paint would make her sick.
She was sick in the hospital a lot. That was scary to me. But I always felt like part of our friend’s family and that made it better. We are still good friends with the family we lived with and in many ways it was a fun year. But I never want to be homeless again.”
Many people wrote to me asking if I knew of safe housing in their area. Although there are a couple of MCS housing projects (described below), for the most part, people with environmental sensitivities are trying to find niches for themselves with very little help from our society. Many have already fallen through the cracks, and others fear that they will too. Rhonda Zwillinger (1997) has poignantly illustrated this to us in her photo-essay of homeless people with MCS entitled, The Dispossessed: Living with Multiple Chemical Sensitivities.
Constructing housing that is safe for all people with sensitivities is almost impossible. Some people move to the country to avoid city industries only to face agricultural chemicals, high-tension lines, and cell phone equipment. Even the inverters required for solar panels emit EMFs. Others move to suburbs and then must confront their neighbors’ lawn chemicals. Renting an apartment is difficult because you cannot control chemical use by your neighbors or the proprietor, and thus may be exposed to smoke, propane cooking, herbicides or pesticides, and fabric softeners. Electrical equipment in the complex can cause problems too: you may be exposed to the generator for the swimming pool pump, next door neighbors’ computers or microwave ovens, florescent light ballasts from your downstairs neighbors, the outdoor electrical panel box if it is on your wall, or cell phones and equipment, in addition to your own appliances. Some people are fortunate to be able to construct safe houses with some buffer against others’ pollution, but it takes considerable resources to do this. Some move almost continually in search of a clean area only to find that pollution is virtually everywhere.
On the other hand, moving into a safer setting helped a lot of people considerably. One woman suffered a series of environmental insults including beauty school and formaldehyde exposures in multiple settings. She endured two ineffective sinus surgeries prescribed for chemically induced nose, head, and shoulder pain. She wrote, in Phase II of my research: “I try to be positive but there were only sixty days from January through November that I was without pain in 1993.” A move to a cleaner area and discontinuing a job with formaldehyde exposure set her on a healthier course. By Phase III of the follow-up study, she was traveling in a converted van to visit family (13,000 miles in one year) and said, “I am very lucky to be as well as I am. I don’t have ‘the old pain’ anymore. But I do have to be on guard for smells every day.”
I believe that housing is the single most important issue regarding environmental sensitivities. A safe zone can help prevent further health deterioration, and provide a place to detoxify after exposures received from the outside community. In my estimation, even research is not as crucial as safe housing. After all, it already seems clear that environmental contamination causes illness. Do we have to wait until we know exactly how the body breaks down in laboratory animals before we allow people to live in safe homes?
Some people have tried to construct housing units for people with MCS. Ecology House in California is the first MCS multi-family housing project in the U.S. The building of Ecology House saw its share of obstacles in regard to the ordering of safe materials. Despite the extreme care taken in the planning process, the units are not safe for all people with sensitivities. The residents deal with periodic pesticide notifications from neighboring properties, and because the housing is in an urban area, traffic exhausts and other city pollutants are a problem to some degree. However, some people have been able to live there successfully without the stressors of exposure to severe toxics from neighboring units. A housing project in Ottawa Canada called Barrhaven has seven of forty-one housing units that are designated “environmental units.” Barrhaven United Church generated the idea, created the Barrhaven Non-profit Housing Corporation, and facilitated the building of the project to provide housing for seniors and those with special needs in 1993. The environmental units were constructed from the ground up of safe materials chosen to offgass as little as possible. Even the concrete for the walkways was specially made. The architect was able to gather surprising cooperation from the community in terms of limiting chemical use in the vicinity.
In some cases, MCS had a profound influence on family planning. For more than half of the women in Phase II of my study who did not have children, MCS was the reason for their childlessness. Reasons included the inaccessibility of medical offices, poor health, financial problems, and fear of passing on MCS to a child.
Being housebound to some degree was a common experience for people with MCS. Some research respondents were able to construct or arrange safe housing, but then felt like prisoners in their homes while trying to avoid outside exposures. Some respondents reported becoming ill from taking walks outside their homes due to outdoor chemicals, such as petrochemical exhausts and pesticides. A number of people reported staying inside to avoid their neighbors’ use of pesticides and herbicides, paints, fabric softeners in dryers, construction chemicals, or other contaminants.
At the time of our study, eight percent of all respondents were totally housebound. Even if the immediate area around the house was safe, venturing into the larger community was risky. Churches, movies, malls, and restaurants were off-limits for many respondents. Almost half of the sample said they were unsafe in all public areas in which perfume was likely to be encountered; and many reported being so sensitive to personal care products that they were unable to have perfumed visitors in their homes. The following comments were fairly typical in regard to public access:
“I am extremely limited, I can drive on unheavily traveled roads with my car air cleaner. I can get myself to the doctor and to food shop. Not much else. I have a recovery period of up to two days after exposure, for example, to perfumes. I have to use a mask, pick times and places very carefully, and be ready to leave or change plans at any time.”
—Forty-seven-year-old woman with MCS for four years
“I have learned I can’t go everywhere I want to go or do everything I want to do so I pick and choose carefully. Before a special outing I rest up for a few days, enjoy the event, then plan a couple of rest days afterwards. I know full well in advance what reactions to expect. I don’t do anything that would result in serious harm. I used to sit at home (afraid to go out), but realized this was only making me worse emotionally and physically. Because of my ‘outings’ there is a little more fatigue—but it’s happy fatigue. I no longer feel trapped or controlled by this illness. I enjoy the quality—not the quantity—of outings.”
—Forty-four-year-old woman with MCS
Many respondents reported that they had experienced severe stress and trauma because of the life changes and losses that took place as a result of their chemical sensitivities. Many were living without necessities, such as housing, medical care, and public access. Others had access to necessities, but reported other kinds of losses, such as career advancement, education, travel, hobbies, and community involvement. Further personal distress was reported as a result of the lack of attention and concern for this health problem by the medical profession and the general public. For some, the stresses became overwhelming. One-fifth of the Phase I respondents had seriously considered suicide, eight percent had made a suicide plan, and three percent had actually attempted it. The following quotations describe severe suffering as a result of severe loss:
“Toxic chemicals ruined life . . . Plus lose husband, social life, inheritance. I’m going to end up alone in a nursing home with rheumatoid arthritis and chemical sensitivity. All my friends and family are busy with their own lives.”
—Woman with MCS for thirty-five years
“My dreams have been shattered. Life has merely become a matter of survival, as if I’m in a prison camp. My self-esteem has been damaged due to hostility and ridicule from co-workers and management. I was formerly optimistic and confident in my ability to overcome obstacles. Years of poor health and increasing persistent obstacles have made me sad and bitter . . . the future is bleak. As my health worsens and money continues to dwindle, I fear I will end up with only one option.”
—Thirty-six-year-old man with MCS for six years
Quality of Life Measures
Instruments commonly used to assess the quality of life demonstrated the suffering of respondents in all phases of my study. Note that these are not measures of psychopathology, but variables associated with happiness and fulfillment. We gathered measures of hope, social support, life satisfaction, and disability-induced dysfunction. The sample scored very low in comparison with people who were sampled in other research.
Low scores on these variables from a more “legitimized” group would cause great alarm among helpers and researchers. But the MCS population, being invisible and delegitimized, does not draw support. These measures may give an indication of how much this population is suffering. Of course it needs to be emphasized that these are means (averages) that do not necessarily reflect the experience of any one person. Some individuals actually scored very well on some or all of the measures. (See Appendix A for published articles and for more detail about the quality of life research.)
With legitimized illness, such as cancer or diabetes, there is the understanding that a person needs to maintain some sense of personal well-being despite the illness. With the aim of extending this concern to MCS, my students and I measured used the Herth Hope Scale (HHS) (Herth 1991), a respected index of well being to measure hope in Phase I participants. We found that MCS respondents had lower levels of hope than several other populations tested by Kay Herth.
Levels of hope in MCS respondents surpassed the hope level only of elderly widowed people. Interestingly, a higher level of hope was associated with a perceived safer home. This information provides support for the instructions to clean up your home environment (see chapter four). Younger people had lower levels of hope than did older people. Adjusting to the loss of lifetime ambitions and the inability to become financially secure may be more difficult than finding out later in life that you have a disability. (For more detail about the hope study, see Gibson 1999).
One important area of study in relation to any chronic health problem is that of social support. We know that for the chronically ill, lower levels of social support are associated with more symptoms and greater mortality. A high level of social support is a good predictor of psychological well being. Phase I respondents scored lower than healthy people on Part II of the Personal Resource Questionnaire 85 (PRQ85) (Weinert 1987), which measures how much support the test takers feel they have. They scored slightly lower than a sample of women with diabetes who were tested by a fellow researcher, and quite a bit lower than a sample of people with multiple sclerosis. (For more detail about social support, see chapter eleven, and Gibson, Cheavens, and Warren 1998).
During Phase III, we used three popular tests that measure satisfaction with life. MCS respondents scored much lower than did medical outpatients, elderly respondents, people with other chronic illnesses and handicaps, and residents in all countries except for China. (See Gibson, White, and Rice 1997 for more details.)
The Impact of Illness on Daily Functioning
The Sickness Impact Profile (SIP) (Bergner, Bobbit, Kressel, et al., 1976; Bergner, Bobbitt, Pollard, et al. 1976) looks at respondents’ assessment of their limitations in daily functioning caused by illness. Phase IV respondents’ scores were somewhat alarming in that they were indicative of more dysfunction than is reported with a large number of other illnesses. MCS respondents had particular trouble in the categories of “Work,” “Alertness,” and “Recreation and Pastimes.” Considerable impairment was also shown on the measures for “Sleep and Rest,” “Social Interaction,” “Home Management,” “Emotional Behavior,” and “Mobility.” (For more information, see Gibson, Rice, Dowling, et al. 1997).
Limitations and Thwarted Goals
The severe limitations and losses that people with MCS often experience are two good reasons for such low scores on quality of life measures. Rippere (1983) showed that people with allergies reported substantial limitation and impairment in their quality of life, and it was expected that people with chemical sensitivities would report even more impairment. We asked Phase I respondents, “Is there any goal or activity that you have really wanted to pursue but haven’t been able to because of chemical sensitivity?” Responses here included the categories of work, education, hobbies, travel, visiting family, and attending church. Remember, access to public buildings is contingent on the ability to tolerate exposure to smoke, petrochemicals, perfumes, and pesticides. Because MCS respondents cannot be near these chemicals without serious health consequences, their work and educational lives are jeopardized.
One-quarter of all participants in Phase I had their education interrupted or denied due to chemical sensitivity. One-third had to discontinue their involvement with their hobbies (e.g., painting) because of their inability to use artistic materials. Others missed travel, socializing, and visiting family. Respondents’ comments were indicative of the severe and even catastrophic impact of coping with their sensitivities. One person wrote, “It has been my ‘goal’ to be self-reliant, but this appears to be impossible.” Another wrote, ”I have endured losses and heartbreak to degrees that have nearly devastated me.” Still another said, “I’ve stayed out of (romantic) relationships because I didn’t think anyone would understand my needs. I’ve not had children because of this illness. These have been hard [decisions] to deal with. Sometimes I grieve for the many losses I have had; it never seems to end.”
Clearly, as a group, people with MCS do not have access to the benefits of normal work or social lives. Rippere (1983) pointed out that her respondents (many of whom were allergic to foods) missed out on many occasions that provided others with pleasure and socializing. Chemically sensitive people miss out on not only pleasure, but the necessities for independent living. When people are unable to work, further their education, or enter public buildings, serious quality-of-life issues are raised.
Neurological symptoms, for some, added to people’s isolation and were cause for embarrassment. Although one woman expressed anxiety regarding what others might think of her, she explained that those who know her well understand her slurred speech, unsteady gait, and lessened cognitive abilities. Cumulative losses for people with MCS were more than most any “normal” person would be able to bear without experiencing severe distress.
“I don’t think about goals anymore. For the past thirteen years, I have had hopes that were destroyed. I used to work. . . . I counseled people. I gave up my job, used to direct groups at home, but slowly I couldn’t be with people. I moved . . . and started groups again, but I got sick. I loved cats—had to give them up. I joined groups. I gave that up. Each time my world got smaller, I cried and mourned my loss. Then, I accepted my life and made the best of what I have left. I don’t think about tomorrow. I’m grateful for each moment that I survive. I’m overjoyed for each ‘good day’ when I’m able to accomplish something I want that day.”
—A woman with long-term MCS
It is important to understand that personal distress in the face of chronic illness/injury is normal and understandable. (See chapter eight for more about adjusting to chronic illness.) This distress is seen in people with a number of chronic illnesses, particularly those such as chronic fatigue syndrome and fibromyalgia. Anderson and Ferrans (l997) found that all of their interviewees with CFS reported that the condition had severely impacted every aspect of their lives and led to many losses including loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and spontaneity and even sense of self. Emotional well being was significantly affected by the number of physical and functional losses, including the simple and basic abilities to take care of one’s self. Many participants found it difficult to even envision their future, and if they were able to see a future, most only saw it as “bleak”.
Sometimes goals diminish to become simple and survival-related. One person’s goal in my study, for example, was “not to get migraine headaches that incapacitate me for days.” At certain times your goals may be that basic; but for most people, this is temporary.
Despite the challenges, not one respondent in any phase of my research gave up easily. People struggle against insurmountable odds to better themselves. The accusations that those with MCS are experiencing “secondary gain” or somehow “milking the system” are ludicrous when one listens to descriptions of effort and loss as in this account of one woman’s attempt to attend college:
“I was diagnosed with chronic fatigue syndrome and again was told it was temporary and to continue with my plans to go to college. My doctors told me I was doing better even though it now took me an entire day to do a half day’s work. I could no longer do yard work or cook meals, thought processing was extremely erratic and I was having difficulty walking. I actually attended one class. The first half was a struggle to keep up with mentally, and the last half was just a blur. Fortunately, I had arranged for someone to pick me up after this class. I was disoriented upon leaving the building and, after walking in circles, finally reached the prearranged place to be picked up. It was extremely difficult for me to accept that not only would I not be going to college, I was unable to do anything else. I knew that I was getting worse, but had so wanted and hoped to make this change I believed the doctors.”
—Woman with MCS for eighteen years
Fortunately, almost everyone had some blessings in their lives. Some were almost totally housebound, but had loving and supportive families. Some were ostracized by family, but had found support and strength through helping others. Some could still use computers; some could leave their homes. People seemed to take, use, and develop whatever resources they could to make some semblance of reasonable lives. Some described riding horses, gardening, writing books, heading support groups or organizations, supporting others with MCS, writing poetry, and starting MCS-related businesses. (See chapter fourteen and Appendix C for further resources along these lines.)
Every aspect of one’s life can be impacted by environmental sensitivities. For many, the condition is more of a hurricane than a redirecting wind. It takes resourcefulness, patience, and fortitude to confront the challenge of disabling sensitivities. The remaining chapters in this book are designed to help you with this undertaking.