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ILRU & NCIL: National Training & Technical Assistance Project
Expanding the Power of the Independent Living Movement
Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Livingby Table of Contents Acknowledgements | An added bonus for you from the author: A list of MCS Support / Education / Advocacy Groups |
Label |
Number |
|
MCS Related* |
44 |
|
Psychiatric** |
27 |
|
Chronic Fatigue Immunodeficiency Syndrome |
7 |
|
Musculoskeletal |
3 |
|
Circulatory |
2 |
|
Immune Related |
2 |
|
Respiratory |
1 |
|
GI |
0 |
|
Did Not Know |
9 |
|
Other |
10 |
* Includes labels such as multiple chemical sensitivity, environmental illness, toxic encephalopathy, sick building syndrome, sensitivity to fumes, multiple allergies, chemical allergy, multiple hypersensitivities, etc.
** Psychiatric labels include: depression (n=7), posttraumatic stress disorder (n=4), conversion disorder (n=2), schizophrenia (n=2), somatoform disorder (n=2), anxiety disorder (n=2), affective disorder (n=2), schizoid personality disorder (n=1), dementia (n=1), "emotional" (n = 1), global assessment of functioning scale = 50 (n=1), and unspecified psychiatric (n=2).
Psychiatric labels can be inaccurately and inappropriately assigned
for a person even if their personal physician supplies only a physically
based diagnosis. For example, 27 people in my study were granted
disability benefits for psychiatric reasons even though only seventeen
people had filed their petition with a psychiatric diagnosis. Even
if none of the applicant's personal health providers believe the
applicant has a psychiatric diagnosis, an SSA-chosen expert's psychiatric
designation can be used for disability eligibility. For example,
one woman filed for disability for chronic fatigue syndrome (CFS)
and was granted disability for paranoid schizophrenia. Because of
financial desperation, some people reluctantly allowed the use of
psychiatric diagnoses in order to receive benefits necessary for
them to survive.
Physician documentation may be the most crucial component of the application process for those with MCS. The documentation needs to be from physicians who are knowledgeable about and supportive of chemical sensitivity. Physician statements should include information about the condition in general, and contain detailed information that documents that the person in question meets the requirements under Social Security of being unable to engage in gainful employment. The examiners and judges are supposed to give greater weight to the opinions of the person's own physician, to physicians with long relationships with the person, and to physicians with special training in the area in question rather than to opinions of consultants who have reviewed the person's medical records or only seen the person once. However, having actually seen the person also gives more weight to a physician's testimony. Therefore agreeing to see a hostile independent medical examiner (IME) hired by industry may be a poor decision on the part of the applicant because this will give more to the IME's testimony.
- Maintain a list of physicians knowledgeable about MCS who will help persons in need of disability documentation for accommodation requests or for disability compensation applications.
- Help people to think critically about remunerative work they may be able to perform.
- Offer to provide educational resources and training about MCS so workplaces can make better decisions.
- Consider providing employment to someone with MCS in order to have an expert resource for persons requesting advocacy.
- Follow court related decisions about workplace accommodations for MCS in order to be aware of what courts are interpreting as "reasonable accommodation."
- Help the person develop stress-management mechanisms to help then through the long and difficult period of acquiring disability compensation.
For more in-depth suggestions on making workplace accommodations, go to the Job Accommodation Network's Web site at http://www.jan.wvu.edu/media/MCS.html.
Have the following workbook on hand to help people brainstorm about strategies:
Multiple Chemical Sensitivities at Work: A Training Workbook for Working People. 1993. New York: The Labor Institute. Available from The APEX Press, Publications Office, P.O. Box 337, Croton-On-Hudson, NY 10520. Also available is a half-hour videotape "MCS: An Emerging Occupational Hazard." Both are also available from ECHO, P.O. Box 0119, Hebron, CT 06248-1119. Phone/Fax: 860-228-2693.
THE HOUSING CHALLENGE IN MCS
CURRENT HOUSING CONDITIONS FOR THOSE WITH MCS
Housing may be the single most crucial element in survival and possible improvement for someone with MCS. Yet it is almost impossible for people with MCS to find places to live that are truly safe for them. Housing may be their most difficult challenge, a challenge greater even than for people with other disabilities. Toxic chemicals such as formaldehyde, and those found in glues, paints, new carpet, and pesticides are commonplace in construction of all types. In addition, it is impossible to control what occurs beyond one's property lines. City dwellers are subject to industrial emissions, vehicle exhausts, toxics used by neighbors such as lawn chemicals, and a myriad of other poisons. Rural dwellers are exposed to farm chemicals that include pesticides, herbicides and chemical fertilizers. All traditional pesticides and herbicides are extremely toxic. In fact, some insecticides were first mass-produced as chemical warfare agents for World War II. The use of pesticides is now so widespread it is almost impossible to avoid exposure to them. We use these chemicals on our pets, our food, our land, and ourselves. Between the widespread occurrence of toxic building contaminants and the tremendous cost of home cleanup, few with MCS actually live in truly safe conditions. Those who do may have spent their life savings to redo their homes, or may be living beyond their means to afford a home that is isolated enough to avoid neighbors' toxins.
It is imperative for the person with MCS to create the cleanest possible living space. This cleanup requires learning about everyday toxics and safer alternatives, and demands at least some financial investment. Respondents in my treatment study had spent an average of $57,000 to replace toxic carpeting and furniture, buy water and air purifiers, or move if their home could not be cleaned up. A few with enough money built homes out of safer materials, but this requires considerable investment of time, money, and energy. Those who have built their own homes report that it is necessary to supervise every aspect of the project, including inspecting every item that arrives for use. One must be on guard for contractors substituting less safe items and materials not being as represented. If someone has the resources to be able to build a safe home, there are a number of good resources and consultants to help with the process.
Even though it is important for every person with MCS to try to create as safe and chemical free living space as possible, only about 40% of people in my life impact study said that they lived in safe homes. A slightly larger group (44%) said that their homes should be better. And 16% said that their homes were not safe. The Environmental Health Coalition of Western Massachusetts' housing committee found that three quarters of the 49 people with MCS in their housing study had had to stay in places that made them sick at some point. Almost half had spent more than they could afford to stay in safe housing. And over half had encountered landlords who were unwilling to accommodate their MCS.
Some people in both studies were unable to tolerate any traditional housing due to chemicals used in construction, and contaminants left by previous tenants/occupants, and, as a result had lived in substandard and unusual conditions. The Environmental Health Coalition of Western Massachusetts' housing committee found that 10% were homeless at the time of the survey and another 10% lived in situations such as campers, trailers and cabins (Wachsler, 2001). People with lower incomes were most likely not to have adequate housing, with almost half of those with incomes under $12,000 having substandard or no housing. Two-thirds of my respondents had lived in unusual conditions such as in RVs, tents, cars, or porches at some point since developing MCS. One respondent in my research had lived in her horse trailer for a year. The following woman's experience is typical of the nomadic lifestyle that some people are forced to adopt:
I have slept outside summer and winter for about 12 years now - including 30 below - windows open - bundled up and using soapstone rocks to keep bed warm - unheated little building. Have slept under homemade mosquito netting under a pavilion - anchored around chairs for weeks - slept in borrowed tent, borrowed trailer - borrowed camper - have slept on relatives' and friends' porches outside for weeks when roadwork done at my house - have commuted for essentials.
I believe that MCS is an important and unrecognized contributor to homelessness. As people disappear from a visible lifestyle and adopt coping mechanisms such as living on porches and in RVs, they approach the divide between those with and without homes. When they slide over that divide there is no record of it and they disappear. Some go to live in tent communities in the Southwest, but for others it is even worse than that. One woman in my most current study sent me a drawing of her "home," which consists of a wire mesh cage to sleep in. Because she must sleep outdoors, she has constructed this cage to protect herself from dogs and wild animals. Her home is literally a five-foot cage. Gail McCormick, in her book, Multiple Chemical Sensitivity: Narratives of Coping, interviewed a young woman who must sleep outside under a tarp because of her inability to tolerate indoor environments. She lives a nomadic lifestyle moving from place to place in search of safe conditions. Her mother often travels and camps with her, but at times herself needs a break from the rugged lifestyle. Her daughter sleeps outside in the woods while she rents a hotel room. But if there is a wind that blows the tarp down, her mother must get up at night, drive to where her daughter is sleeping, and cover her up again with her tarp because her daughter is too weak from chronic fatigue to get up and retrieve her own tarp. Some would say that these are extreme living conditions even for the homeless. Yet these struggles are all too frequent among people with MCS and remain virtually invisible to the mainstream culture.
One Alternative Model: Ecology House
Ecology House is an eleven-unit MCS apartment complex in San Rafael, California that, although not perfect in terms of its urban location, is a controlled MCS living space. The arrangement allows people with MCS to actually live in community with others. People have different opinions as to whether funding for people with disabilities should be spent on segregated housing for people with the same disability. But Connie Barker, a resident of Ecology House, described the benefits of living there in preventing total isolation of the residents in the IL NET teleconference on MCS (2/20/02). Connie phoned in and described no longer being the "mad woman in her parents' attic," but rather being able to have some sense of community with people who understand her disability. People with MCS spend a lot of time explaining themselves to others and usually are still not understood. Living where other people understand your needs saves valuable energy and time that can be put into creative and constructive pursuits. Although there were a number of problems when Ecology House was built such as difficulty with materials that were supposed to be inert but actually outgassed significantly, it is now working well. Connie reports that there are three or four people there who have gotten substantially better as a result of living there. There is a long national waiting list of people interested in becoming residents.
Connie explained that building with safer materials for MCS housing is only half the battle. Property management is equally important. At Ecology House residents are notified by the building manager no matter what is done and what materials are used. They speak of "safer" materials rather than "safe" because every person's sensitivities are so different. When work is to be done at Ecology House, residents are given ten days notice and material safety data sheets (MSDS) for the products to be used are provided. A resident has ten days during which to suggest an alternative material if he or she is concerned about the proposed product's safety. Ecology House is described well on the Web site www.ecologyhouse.org.
HOW DOES ONE CREATE A SAFE LIVING SPACE?
By the time a person comes to you for help she or he may be in an almost impossible situation regarding housing. The person may be homeless, living in a car, or in housing that is making her or him sick. You may hear stories about past and ongoing housing problems. There may be a need for financial assistance to create even a marginally safe living space. The person needs somehow to create the cleanest living space possible within her or his means.
Assess the Outdoors
The person first needs to assess the outdoor environment of any potential living site to be sure that the area is not subject to fumes from industry, heavy traffic emissions, pesticide spraying by the city or by close neighbors, emissions from neighbors' gas appliances, laundry exhaust and laundry product fumes, or electromagnetic frequencies from cell phone towers or other sources.
Laundry product fumes such as those from scented fabric softeners can be difficult to detect on a single site visit because of their intermittent use. But their presence is important to determine because they can cause severe reactions in some people. Some suggest camping outside for a couple of days at a prospective home to find out if neighbors use such products. However, even if none are detected, people can still change their products and start using them in the future. This is just one example of the tremendous difficulty that people with MCS face in finding housing. Further investigation might involve calls to potential neighbors or to the municipality to inquire about the use of pesticides or other toxics, driving around a large perimeter looking for potential pollution sources, visiting the site at all hours to observe the conditions there, and other methods.
Mold exposures can also be a problem for a person with environmental sensitivities. The presence of molds in residences can be difficult and expensive to deal with. They typically occur in damp areas such as those with heavy rainfall, high humidity, or near oceans or other bodies of water and/or in houses with roof or plumbing leaks or after other flooding.
Cell phone towers, overhead power lines, or similar sources of electromagnetic radiation and electromagnetic fields need to be examined also. For example, it is probably not advisable to lease a second floor apartment with power lines right outside a window and/or a transformer box mounted on the pole in front of or behind the house. Also best avoided is an apartment, condo, or other multi-unit situation where the power panel for the whole complex is on the exterior wall of one of the bedrooms.
Assess the Indoors
The person with MCS needs a home free of ALL petrochemical heat and cooking sources, pesticides, conventional cleaners, solvent-containing paints, formaldehyde-emitting furniture (foam and pressed board), perfumes and air fresheners, tobacco smoke, and other volatile chemicals. Some need the home to be free of animal allergens as well. The house should not be moldy; old homes and those with damp cellars are the most likely to have this problem.
Petrochemical heat is a sensitizer and dangerous for any person with MCS. Even if the heat is indirect (as in radiators where the fuel does not directly enter the living space), you still have the possibility of spills during delivery, leaking tanks, and other accidents that can render a home uninhabitable for someone with MCS. Heat sources need to be electric, solar, or at the very least, hot-water baseboard with the fuel tank outside of the building. Although I still don't endorse this option, some people with MCS live with petrochemical heat if the heat source is at a great enough distance from the living space and the fuel source is not a direct one.
The person should inquire about the pesticide history of a potential home by questioning the landlords, builders, or neighbors. Formaldehyde impregnated building materials such as particle board emit considerable formaldehyde particularly in their first year and continue to outgas for ten or more years. Better construction materials include exterior grade plywood, as it contains a lesser amount and a less toxic type of formaldehyde (phenol formaldehyde rather than urea formaldehyde). Interior grade plywood may outgas formaldehyde as much as the particleboard. Cupboards and other visible particleboard products can be sealed with less toxic products designed to prevent outgassing of fumes. However, people who have tried this suggest that it might be safer to simply replace particleboard or other composite board cupboards with old-fashioned metal or glass shelves and cupboards or to cover the particleboard with aluminum or steel foil, whatever is tolerated best.
Conventional carpet may emit dangerous volatile organic compounds (VOCs), dyes, formaldehyde, and worst of all, 4-phenyl cyclohexane (4-PC). In October of l987, the EPA began installing carpet in its Waterside Mall headquarters in Washington, D.C. The EPA received 1,141 health complaints from employees, but unfortunately took two years to remove the toxic carpet. Some employees became permanently sensitized from the experience; some are permanently unable to work in the building, and some are unable to work at all. It appears that the 4-PC may be the most dangerous element in carpeting. People with MCS do best in uncarpeted spaces, i.e., those with tile, brick, wood, or old linoleum floors. For some, older carpet (8 or more years old) may be ok, but for those with dust allergies, no carpet may be tolerable. If a space seems ok except for the carpet, it is sometimes possible to make it tolerable by covering the carpet with cotton sheets or area rugs and or getting permission to remove the carpet while living there.
Choosing a Home and Making it Safe
Once the person has chosen a living spot he or she needs to be as strict as possible about the purity of anything that goes into the home. The more sensitive the person the more careful he or she must be. Making a clean home requires becoming knowledgeable about paints, fabrics, carpet (better not to have any), cleaners, natural bug control, and water and air filters. Although filters do not completely compensate for dirty air or unsafe water, many people with MCS use them to improve their air and water quality. There are a number of types of filters available. While it can be tedious at times, a person with MCS is best advised to learn about them and decide which ones might be useful.
One theme that has emerged in an inquiry by the Chemical Injury Information Network (CIIN) is that some people with MCS attempt to compensate for unsafe homes with filters, supplements, and treatments (Wilson, 2001). People should be discouraged from doing this, as it is rarely possible to make up for an unsafe environment by trying yet another treatment.
Provide any financial aid possible if needed for cleanup. The person may need air cleaners, water filters, replacement items for unsafe items in the home.
Guide the person toward resources for non-toxic living. The following resources are an excellent start:
Baker-LaPorte, P., Elliot, E., & Banta, J. (2001). Prescriptions for a Healthy House: A Practical guide for Architects, builders and Homeowners. New Society Publishers. www.newsociety.com Phone: 800-567-6772
Berthold-Bond, A. 1999. Better Basics for the Home: Simple Solutions for Less Toxic Lifestyle. New York: Three Rivers Press.
Berthold-Bond, A. 1990. Clean & Green. Woodstock, NY: Ceres Press.
Bower, L. M. 1995. The Healthy Household.
Bower, J. 1997. The Healthy House: How to Buy One, How to Build One, How to Cure a Sick One.
Bower, J. 1997. Healthy House Building: A Design and Construction Guide.
Bower, J. Understanding Ventilation: How to Design, Select, and Install Residential Ventilation Systems.
"Your House, Your Health: A Non-Toxic Building Guide" (VHS video). Note: The Bower books and the VHS video are available from The Healthy House Institute, 430 North Sewell Road, Bloomington, IN 47408. Phone: 812-332-5073; Web site: http//:www.hhinst.com/
Ingram, C. 1991. The Drinking Water Book: A Complete Guide to Safe Drinking Water. Berkeley, CA: Ten Speed Press.
Lawson, L. 1994. Staying Well in a Toxic World: Understanding Environmental Illness, Multiple Chemical Sensitivities, Chemical Injury, and Sick Building Syndrome. Lynnword@aol.comLawson's book is an excellent overview of environmental hazards and has been referred to as "The Silent Spring of the 90s."
Lynn Dadd, D. L. 1990. Nontoxic, Natural, and Earthwise. New York: Putnam.
Marinelli, J., and P. Bierman-Lytle. 1995. Your Natural Home. New York: Little Brown.
Natural Home, a fairly recently established magazine, is an ongoing source for environmentally friendly living. Debra Lynn Dadd is on the Editorial Advisory Board. Contact them at 201 E. Fourth St., Lovelend, CO 80537-5655. Phone: 800-272-2193; Fax: 970-667-8317; e-mail: naturalhome@interweave.com; Web site: http://www.naturalhomemag.com/
Olkowski, W., S. Daar, and H. Olkowski. 1991. Common Sense Pest Control: Least Toxic Solutions for Your Home, Garden, Pets, & Community. Newtown, CT: Taunton Press.
Pearson, D. 1996. The Natural House Catalog. New York: Fireside. This book is a broad overview of environmentally friendly buildings, products, organizations, and resources. Extensive resource list, e.g., there are sixty-seven companies listed just for paint.
Rousseau, D. 1997. Healthy by Design: Building and Remodeling Solutions for Creating Healthy Homes. Point Roberts, WA: Hartley & Marks. Described as an "architect in a book" how-to manual for siting, heating, ventilating, water, materials, finishes, etc.
Rea, W. J., and J. Enwright. 1988. Your Home, Your Health, & Well-Being: You Can Design or Renovate Your House or Apartment to Be Free of Outdoor and Indoor Pollution. Berkeley, CA: Ten Speed Press.
Rousseau, D., and Wasley, J. 1997. Healthy by Design: Building and Remodeling Solutions for Creating Healthy Homes. Point Roberts, WA: Hartley & Marks.
Stein, D. 1994. Least Toxic Home Pest Control. Revised Edition. Summertown, TN: Book Publishing Co.
Wilson, C. 1993. Chemical Exposure and Human Health. Jefferson, NC: McFarland & Co., P.O. Box 611, Jefferson, NC 28640. Phone: 910-246-4460. Orders: 800-253-2187. An excellent reference to 314 chemicals. Information can be accessed by both symptom and chemical name.
ACCESS TO PEOPLE AND PLACES
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.
Partnering
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.
Parenting
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.
Extended Family
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.
Friendships
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.
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.
Chapter 6
IDENTITY, SELF, AND PSYCHOLOGY IN MCS
PSYCHOLOGICAL CONSEQUENCES OF MCS
Any mainstream discussion of MCS or electrical sensitivity goes immediately to the topic of whether or not they are psychological. This discussion is ill-informed in that it confuses psychological reactions and symptoms with psychological causation and wastes precious time and energy. It is NORMAL for there to be psychological issues for any person who has experienced a loss. MCS is a long-term drawn out experience of multiple losses for most people. All chronic illnesses and disabilities require adjustments, increase demands, and have psychological consequences. MCS in particular may have a significant psychological overlay accompanying the condition that can cause people to confuse it with a psychological condition. I believe there are a couple of reasons for this. One is that for many the target organ most affected by chemical exposures is the brain. Brain reactions include changes in mood, energy level, aggression level, appetite, ability to think and remember, and many others. Another reason is that MCS is so demanding in terms of the changes it requires and so incongruent with the kind of culture that we live in that people often develop personality changes in response to the stress of having the condition. For those with electrical sensitivities, the problem is even worse. I call these two types of effects the direct and indirect psychological effects of having sensitivities.
Direct Psychological Effects
Direct reactions are those that people experience as a direct effect of chemical exposure, e.g., crying/depression after an exposure to natural gas. Direct effects can include depression, anxiety, panic attacks, irritability, restlessness, confusion, anger, and others. One woman in my research described being outside when pesticides were being sprayed on a neighboring field and becoming so angry that she actually was out of control. From that point on, she experienced this whenever she was exposed to pesticide. Irritability, anger, depression, and panic are common reactions to chemical exposures for those with MCS. It is important for people to be able to identify as many of their direct effects as possible in order to manage their own behaviors. A clear understanding of one's own reactions helps in a) avoiding or escaping dangerous exposures, b) understanding where a negative feeling is coming from, and c) controlling one's behavior in order to avoid negative consequences. It is very important for people NOT to attribute their chemical reactions to other social or personal variables. For example, if irritability is present from a perfume exposure it is important to understand that this is the cause in order to prevent misbehavior directed at others.
Indirect Psychological Effects
Secondary effects come from having to cope with the direct reactions and with sensitivities in general over a period of time.
Loss. People with MCS often lose relationships, work, hobbies, public access, belongings (because they are intolerable chemically or because of financial loss), their ability to control their physical appearance, travel opportunities, contact with family, and educational or retirement plans. For some it is an ongoing process of losing almost everything. Others are able to make some changes yet preserve the essence of what was important in their lives. But most people with MCS will have some mourning to do regarding loss.
Isolation. Physical isolation is a hardship that compounds the mental isolation of having a misunderstood condition. When added to other stressors such as possible poverty and loss of home and/or work, it can be extremely traumatic. The isolation can be even worse for those with electrical sensitivities because of their difficulty using phones or computers for communication.
Fear. In an industrial society constant vigilance is required in order to avoid chemical exposures. There are no more light-hearted outings when part of the person's attention needs to be on guard for possible devastating exposures. In addition, the person faces uncertainty about the future. Given the "spreading phenomenon" associated with MCS, people know that they may eventually face even more losses with respect to livelihood, home, and physical and even cerebral abilities.
Anger. The loss, misunderstanding, physical symptoms, discrimination, and misdiagnosis naturally lead to anger and frustration. People need ways to process and come to terms with their anger so that it won't control or define them.
Obsessive-compulsive behaviors. For self-protection, people may develop behaviors that appear obsessive-compulsive to those who do not understand the importance of chemical avoidance. Survival with sensitivities may require making phone calls ahead to check on pesticide applications before going to a public place, watching for smokers in a crowd, sniffing for perfume, washing clothing in baking soda to clean out manufacturing chemicals or residual scented laundry fumes, avoiding electrical appliances, and other such protective actions. These behaviors certainly conflict with any type of spontaneity and can cause others to make judgments about people's psychological health that may not be accurate.
Lack of choice about public behavior. If people suffer from brain reactions to chemicals, they may face embarrassment about becoming emotional in public as a result of exposures. Irritability, depression, apathy, and fatigue can all surface from exposures and leave the person with less choice than preferred when it comes to behaviors in public contexts. Neurological reactions are not voluntary.
Lack of privacy about health. For some physical illnesses, privacy exists. However, for visible disabilities and conditions that require workplace accommodations, this privacy does not exist. Co-workers may make negative judgments about people who ask for accommodations perceived to be unusual. Media programs that debate the legitimacy of MCS or ES cause further anger, frustration, and depression for those who live with it.
Loss of choice regarding a comfortable or chosen lifestyle. People often must make so many changes to cope with MCS that they no longer are living a lifestyle that feels congruent with their sense of self. Yet the changes may all have been necessary for survival. One woman in my research described this problem:
This illness has changed my sense of choice. I think that choice is extremely important. Prior to illness, if I worried over or was unsatisfied with a situation (such as a job), I always felt there were many choices, and I'd be able to change any situation that was difficult or dissatisfying. Presently, I am only able to work out of my home environment, and I am unhappy with my limitations.
Negative attitudes toward authorities/conventional medicine. Those with MCS have generally received such poor treatment from medical providers that they may have anger and distrust toward representatives and practitioners of conventional medicine.
All resources are taken up with coping with health. If all time, money, and energy are consumed by the effort to survive, higher functions such as spiritual and personal growth may be put on hold. Although the person intends for this to be temporary at the time, if the survival crisis is ongoing, those higher needs can remain on hold indefinitely.
The loss of a continued stable sense of identity. Anselm Strauss (l984) has discussed the fluctuations in identity that come as a result of chronic illness. The exposures in MCS often cause brain reactions that feel foreign to the person experiencing them. Since reactions fluctuate there may result a discontinuous feeling of identity. When not reacting, the person actually somewhat forgets the experience of being that sick. But when in the middle of a reaction, previous experiences of wellness and the person's previous base of personal growth and direction cannot be accessed. Identity therefore fluctuates through periods of limbo, when the person waits for reactions to wear off. Relationships are interrupted during these times while others' lives continue. The necessary interpersonal catching up is difficult and the person with MCS may be seen by others as unreliable or as an inconsistent presence.
Given all of these challenges, it is difficult to maintain a familiar or viable identity. As with any disability, the person with MCS must come to terms with a new sense of self that includes the disability and honors remaining strengths while letting go of lost abilities. This is very difficult to do in the midst of physical symptoms, financial loss, personal rejection, and loss of roles. Consequently, many have a very difficult time and suffer considerable distress.
Identity Changes
The bad news. My students and I asked people with MCS how their sense of self had been affected by having MCS and categorized the results according to themes. Some expressed feeling dislodged and isolated from everything they had previously depended upon or thought of as self. Others felt resentment at having so little control over not only external life circumstances, but also internal states of mind due to brain reactions to chemicals. This was a source of great suffering for people who had worked on becoming a particular kind of person only to have their personal growth hijacked by involuntary states of mind such as irritability and confusion. People felt robbed of the lives they had planned; younger people had to leave careers and older people had to scrap retirement plans. People were traumatized by the realization that the MCS could or would eventually rob them of absolutely everything including relationships, career, hobbies, travel, athletics, art, and retirement plans. Not everyone is able to face this realization and find anything positive in it. In fact, most people in their right minds would not find it positive. People struggled with feeling deserted and disconnected to people and to community. Some hit bottom and were not able to recover. Lives disintegrated under the pressure and sadly some wrote of their fear that they would eventually have no option but to commit suicide.
The not so bad news. You can see that the obstacles to be negotiated in the process of coping with MCS are over-whelming. Some people understandably disintegrate under the pressure. But almost surprisingly, some report finding actual personal growth in the experience. People in our research learned new information, developed new skills, found new friends who better understood their problem, found new tolerance for others, grew an appreciation for small blessings that really matter, found self-esteem despite being different, and even grew spiritually from the experience. This group was able to re-build their identity so as to accommodate the MCS and grow either in spite of or because of it. Goodhart and Lansing (l997) in their book on helping people with chronic illness describe these people as the phoenixes rising from the ashes. This is the goal of the advocate who works with people with MCS to increase the probability that they will be phoenixes and somehow thrive in the midst of incomprehensible hardships.
- Help the person identify and take credit for what he or she has done well in regard to coping with MCS. It is an almost impossible task to live a productive life with such a limiting condition. To succeed at all is cause for celebration.
- Help the person identify brain reactions occurring in order avoid mistakenly attributing them to incorrect sources.
- Help the person process/face loss, anger, and disappointment. Refer to counseling/therapy if needed.
- Help the person remember and "keep" the qualities they like about themselves while re-structuring the self to include a disability.
- Help the person learn to value the self by new yardsticks when the old conventional measures of productivity no longer work.
- Help the person to find creative ways to combat the isolation.
- Help the person to find creative outlets.
You can see that the life impacts of having MCS and/or ES are extensive. Yet people with MCS have found ways of coping even without any cultural support. A number of people with MCS and ES have made tremendous contributions to disability and environmental advocacy and policy. Some of the MCS advocates are people who began support networks when there was absolutely no knowledge or support of any kind for those with these hidden disabilities. How much easier would their paths have been had some support and advocacy been available to them?
Although there are no official data on what percentage of people
with sensitivities commit suicide, it happens when the stresses
become too severe and the person sees no way out. Many of these
people have no money, no home, no support, and certainly no advocates.
One supportive person may be a lifeline to someone who is quickly
losing her or his place
in society.
By informing yourself about MCS and ES you are helping to ease the way for people who could otherwise fall completely through the cracks of our system. You could be the only person in someone's life who actually believes him or her and is willing to listen and brainstorm about possible actions. Having just a basic understanding of the problem and being willing to learn from people with MCS and ES will place you in an excellent position to help.
It is expected that many more people will develop MCS in coming years due to environmental contamination. Many of the people in my study have had MCS for decades (the average time was 15 years). Therefore, if MCS is environmentally caused, many people suffered their initial sensitizing exposure many years ago. How many more people are developing MCS now as a result of increasing air, water and food contamination? And events such as the World Trade Center destruction set up large portions of the population to develop environmentally induced illnesses that may or may not develop into MCS. It is crucial that our institutions recognize and respond to the plight of these people in order to be positioned to help the increasing numbers who will request help. However, I do not expect that this recognition will begin in the hierarchical/professional institutions such as universities and medical centers, but rather in grassroots types of settings where people have ongoing contact with people with the problem. The MCS support groups have begun the fight for recognition of this disability. centers for independent living are perhaps the next level where this work can continue with your help.
Pamela Gibson, Ph.D.
Associate Professor of Psychology
James Madison University
MSC 7401
Harrisonburg, Virginia 22807
540-568-6211, ext. 6195
gibsonpr@jmu.edu
Pamela Reed Gibson, Ph.D. is Associate Professor of Psychology at James Madison University and has been researching the life impacts of multiple chemical sensitivity since 1992. Her MCS research has resulted in several journal articles, a number of conference presentations, and the self-help book Multiple Chemical Sensitivity: A Survival Guide (New Harbinger Publications, 2000). Dr. Gibson earned her Ph.D. in clinical psychology in 1991 from the University of Rhode Island.
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The IL NET is a collaborative project of Independent Living Research Utilization (ILRU) and the National Council on Independent Living (NCIL), with funding from the Rehabilitation Services Administration.
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