Understanding and Accommodating MCS

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This article is very good. Read it on MCS site. Goes into

everything, social security, family, employment, public

transportaion, and the mourning your previous life. Worth reading.

ILRU & NCIL: National Training & Technical Assistance Project

Expanding the Power of the Independent Living Movement

Understanding & Accommodating People with Multiple Chemical

Sensitivity in Independent Living

by

Pamela Gibson, Ph.D.

Madison University

Table of Contents

Acknowledgements |

Chapter One |

An Introduction To MCS and ES |

Description |

Causes/Hypotheses About How MCS Develops |

Prevalence |

Cultural Response |

How to Help |

Chapter Two |

The Health Care Challenge in MCS |

How to Help |

Chapter Three |

The Employment Challenge in MCS |

Holding Onto Employment for Those with MCS |

Getting Compensation for MCS |

How to Help |

Chapter Four |

The Housing Challenge in MCS |

Current Housing Conditions For Those With MCS |

How Does One Create a Safe Living Space? |

How to Help |

Chapter Five

Access to People and Places| |

Access to People |

Access to Places |

How to Help |

Chapter Six |

Identity, Self, and Psychology in MCS

Psychological Consequences of MCS

Self and Identity in MCS

How to Help

Conclusions

About the Author

An added bonus for you from the author: A list of MCS Support /

Education / Advocacy Groups

Acknowledgements

DESCRIPTION

In multiple chemical sensitivity (MCS) a person develops markedly

negative reactions to everyday chemical exposures. These include

exposures to pesticides in buildings, in gardens, on our food, and on

pets; chemical cleaners; petrochemical heating systems; paints;

perfumes; industrial emissions; and a myriad of others. We have been

conditioned to think of these exposures as being " normal " and

inconsequential, but for a growing portion of the population they are

not. The condition of MCS develops in two stages induction and

triggering. In induction some contact with chemicals causes the

person to sensitize to at least one class of chemicals. This contact

can be one large chemical exposure such as a chemical spill or a

pesticide application, or it can be a low-level, ongoing exposure

such as one might experience in a workplace with poor ventilation

combined with copy fumes, perfume, and chemical cleaners. After

induction the person develops sensitivity to the chemical that was

involved in the exposure and to other related chemicals. Thereafter

the person will respond with symptoms when exposed to any of this

class of chemicals. This is called " triggering. " The sensitivities

developed are usually more or less permanent, although the kind and

intensity of reactions may vary. In what is called the " spreading

phenomenon " the sensitivities tend to spread over time to other

related chemicals and also to other classes of chemicals. The primary

way to avoid reactions once sensitivities have developed is to avoid

contact with the triggers. With each new sensitivity this becomes

more difficult and the person's access becomes more limited. For this

reason one of the major goals in helping people with MCS is to try to

limit the spreading by reducing chemical exposures in order to

preserve what tolerance the person still has. Unfortunately it is not

unusual for people developing MCS to continue to expose themselves to

chemicals because at first they do not link their reactions to

chemical exposures and/or do not know that repeated exposures can

cause a worsening or spreading of their sensitivities.

Although less is known about electrical sensitivities (ES), people

who experience them report that they develop in much the same way as

MCS. An initiating exposure to an electrical field causes the

sensitization, which then sets the person up to experience negative

health effects in response to any future contact with electrical

fields or radiation. Avoidance of electrical fields is then necessary

in order to avoid debilitating health reactions.

What Kinds of Negative Health Reactions Occur?

MCS symptoms can affect any organ system including respiratory,

digestive, neurological, endocrine, urinary, cardiovascular, or

immune. The health problems experienced from each trigger vary from

person to person, but tend to be stable for each person with each

trigger. This means that one person may have a constellation of

symptoms from petrochemical exposure such as vehicle exhaust that

includes headache, confusion, dizziness, and nausea. This

constellation occurs each time that person has a petrochemical

exposure. There are many symptoms that people can experience from

chemical exposure. The five most common symptoms in my research were

tiredness/lethargy, difficulty concentrating, muscle aches, memory

difficulties, and long-term fatigue. This suggests overlap with

chronic fatigue syndrome. Other commonly reported symptoms include

digestive problems, joint pain, headache, irritability, tenseness,

spacey feelings, insomnia, depression, difficulty making decisions,

pressure in the head, rhinitis, sleepiness, eye irritation,

coordination problems, dizziness, slow response, chest pain, tingling

fingers and toes, nausea, rashes, and hives. Symptoms from electrical

sensitivities may include loss of muscle control, noise sensitivity,

and other neurological problems.

The health problems triggered by chemicals in people with MCS vary

from mild to life threatening, and for some pose very alarming

situations. For example one woman in my study gets dangerous blood

clots from chemical exposures. An environmental physician described

to me a patient whose heart stops in public if she is exposed to

chemicals. She has to have someone start it again.

Which Chemicals Cause the Most Problems?

In my research, respondents rated pesticides, formaldehyde, fresh

paint, new carpets, diesel exhaust, perfumes, and air fresheners as

being the most troublesome chemical exposures. This is congruent with

other studies. Other triggers that are rated as being very

problematic in various studies include tobacco smoke, fresh asphalt,

moth balls, nail polish and remover, phenol, fabric softener,

furniture polish, dry cleaning chemicals, hair spray, new vinyl

plastic, chlorine bleach, auto exhaust, laundry detergent, natural

gas, shampoos and conditioners, and newsprint.

It is also common for people to suffer from inhalant allergies to

pollens and molds, or from food allergies. These problems further

impair people's functioning. In addition, some people's lives are

complicated by sensitivities to electromagnetic frequencies (EMFs),

emitted by high-tension wires, transmitters, and other large sources

of electricity as well as electrical appliances and other " small "

sources found in the home. Although electrical sensitivity is less

understood and accepted than MCS, there are some studies now that

show that EMFs can alter the permeability of neurons, thereby

affecting the levels and circulation of brain chemicals

(neurotransmitters). In a number of these studies, EMFs also have

been linked to cancer (particularly in children) (Pinsky 1995). I

have seen a person with EMF sensitivity lose the ability to walk

within seconds of exposure to fluorescent lighting. One moment she

was walking fine and the next she appeared to have cerebral palsy

simply from entering a building with this type of lighting.

Are These Reactions to Chemicals a New Medical Condition?

Although MCS still is not officially recognized by the medical

establishment in the U.S., illness reactions from chemicals,

particularly petrochemicals, are not new. Theron Randolph, M.D.,

thought to be the " Father of Environmental Medicine " was studying

allergic reactions to petrochemicals in the l950s, and called this

problem " The Petrochemical Problem. " As in the case of most

visionaries, he was punished rather than rewarded for his work. He

was fired from the University of Chicago School of Medicine for being

a " pernicious influence upon students. " Randolph's book An

Alternative Approach to Allergies, written with Ralph Moss, describes

his early work, his theories, and the basic tenets of Environmental

Medicine. (l996) believes that we need a paradigm

shift in medicine that will take us to an understanding that

toxicants are causes of not only MCS, but of a host of other

illnesses and disabilities. She believes that this shift in

understanding is so substantial as to be comparable to the shift that

occurred that ushered in the germ theory of disease. But very little

training in toxicology is offered to medical students, and this shift

will require a tremendous change in the way that conventional

medicine currently understands illness.

CAUSES/HYPOTHESES ABOUT HOW MCS DEVELOPS

Exactly how do chemical exposures alter the body so that the person

develops illness reactions to subsequent exposures? Although no one

knows for certain, most researchers and physicians who seriously

consider the problem believe that chemical exposure is to blame. The

following are some of the major theories on exactly how chemical

exposures alter the body.

Limbic Kindling/Neural Sensitization

A number of researchers believe that the phenomenon of kindling is

involved in the development of MCS as follows: A nerve cell can be

isolated and placed in a petri dish and then stimulated either with

chemicals or electricity at a level that does not cause it to fire.

But if the cell is stimulated repeatedly, it will eventually fire at

a level of stimulation below that which would usually be required. In

other words it is possible to " kindle " neurological tissue to respond

at lower levels of stimulation simply by subjecting it to repeated

exposures. Some researchers believe that some people have " kindled "

their olfactory system to low levels of chemicals. The olfactory

nerve which transmits the sense of smell runs from the nose and

connects to the limbic system, the old animal brain that is involved

in eating, mood, motivation, and all basic survival functions.

Kindling through this nerve or other pathways could render the person

sensitive to and affected neurologically by common everyday chemical

exposures. Kindling is one of the most respected

What Kinds of Negative Health Reactions Occur?

MCS symptoms can affect any organ system including respiratory,

digestive, neurological, endocrine, urinary, cardiovascular, or

immune. The health problems experienced from each trigger vary from

person to person, but tend to be stable for each person with each

trigger. This means that one person may have a constellation of

symptoms from petrochemical exposure such as vehicle exhaust that

includes headache, confusion, dizziness, and nausea. This

constellation occurs each time that person has a petrochemical

exposure. There are many symptoms that people can experience from

chemical exposure. The five most common symptoms in my research were

tiredness/lethargy, difficulty concentrating, muscle aches, memory

difficulties, and long-term fatigue. This suggests overlap with

chronic fatigue syndrome. Other commonly reported symptoms include

digestive problems, joint pain, headache, irritability, tenseness,

spacey feelings, insomnia, depression, difficulty making decisions,

pressure in the head, rhinitis, sleepiness, eye irritation,

coordination problems, dizziness, slow response, chest pain, tingling

fingers and toes, nausea, rashes, and hives. Symptoms from electrical

sensitivities may include loss of muscle control, noise sensitivity,

and other neurological problems.

The health problems triggered by chemicals in people with MCS vary

from mild to life threatening, and for some pose very alarming

situations. For example one woman in my study gets dangerous blood

clots from chemical exposures. An environmental physician described

to me a patient whose heart stops in public if she is exposed to

chemicals. She has to have someone start it again.

Which Chemicals Cause the Most Problems?

In my research, respondents rated pesticides, formaldehyde, fresh

paint, new carpets, diesel exhaust, perfumes, and air fresheners as

being the most troublesome chemical exposures. This is congruent with

other studies. Other triggers that are rated as being very

problematic in various studies include tobacco smoke, fresh asphalt,

moth balls, nail polish and remover, phenol, fabric softener,

furniture polish, dry cleaning chemicals, hair spray, new vinyl

plastic, chlorine bleach, auto exhaust, laundry detergent, natural

gas, shampoos and conditioners, and newsprint.

It is also common for people to suffer from inhalant allergies to

pollens and molds, or from food allergies. These problems further

impair people's functioning. In addition, some people's lives are

complicated by sensitivities to electromagnetic frequencies (EMFs),

emitted by high-tension wires, transmitters, and other large sources

of electricity as well as electrical appliances and other " small "

sources found in the home. Although electrical sensitivity is less

understood and accepted than MCS, there are some studies now that

show that EMFs can alter the permeability of neurons, thereby

affecting the levels and circulation of brain chemicals

(neurotransmitters). In a number of these studies, EMFs also have

been linked to cancer (particularly in children) (Pinsky 1995). I

have seen a person with EMF sensitivity lose the ability to walk

within seconds of exposure to fluorescent lighting. One moment she

was walking fine and the next she appeared to have cerebral palsy

simply from entering a building with this type of lighting.

Are These Reactions to Chemicals a New Medical Condition?

Although MCS still is not officially recognized by the medical

establishment in the U.S., illness reactions from chemicals,

particularly petrochemicals, are not new. Theron Randolph, M.D.,

thought to be the " Father of Environmental Medicine " was studying

allergic reactions to petrochemicals in the l950s, and called this

problem " The Petrochemical Problem. " As in the case of most

visionaries, he was punished rather than rewarded for his work. He

was fired from the University of Chicago School of Medicine for being

a " pernicious influence upon students. " Randolph's book An

Alternative Approach to Allergies, written with Ralph Moss, describes

his early work, his theories, and the basic tenets of Environmental

Medicine. (l996) believes that we need a paradigm

shift in medicine that will take us to an understanding that

toxicants are causes of not only MCS, but of a host of other

illnesses and disabilities. She believes that this shift in

understanding is so substantial as to be comparable to the shift that

occurred that ushered in the germ theory of disease. But very little

training in toxicology is offered to medical students, and this shift

will require a tremendous change in the way that conventional

medicine currently understands illness.

CAUSES/HYPOTHESES ABOUT HOW MCS DEVELOPS

Exactly how do chemical exposures alter the body so that the person

develops illness reactions to subsequent exposures? Although no one

knows for certain, most researchers and physicians who seriously

consider the problem believe that chemical exposure is to blame. The

following are some of the major theories on exactly how chemical

exposures alter the body.

Limbic Kindling/Neural Sensitization

A number of researchers believe that the phenomenon of kindling is

involved in the development of MCS as follows: A nerve cell can be

isolated and placed in a petri dish and then stimulated either with

chemicals or electricity at a level that does not cause it to fire.

But if the cell is stimulated repeatedly, it will eventually fire at

a level of stimulation below that which would usually be required. In

other words it is possible to " kindle " neurological tissue to respond

at lower levels of stimulation simply by subjecting it to repeated

exposures. Some researchers believe that some people have " kindled "

their olfactory system to low levels of chemicals. The olfactory

nerve which transmits the sense of smell runs from the nose and

connects to the limbic system, the old animal brain that is involved

in eating, mood, motivation, and all basic survival functions.

Kindling through this nerve or other pathways could render the person

sensitive to and affected neurologically by common everyday chemical

exposures. Kindling is one of the most respected theories of how the

sensitivities develop. Proponents of this theory include

, Iris Bell, and others.

Neurogenic Inflammation

Meggs has offered another respected theory of how MCS

develops that involves the respiratory system. He sees MCS developing

much like Reactive Airway Dysfunction (RADS) or Reactive Upper Airway

Dysfunction (RUDS) where cells in the airway become damaged from

irritants and then generate inflammation. Through neurological

connections with other parts of the body (called neurogenic

switching) reactions develop in other areas of the body. That is,

inflammation at one site induces inflammation at other sites via

communication of nerves between the sites. Patients with MCS do have

nasal abnormalities upon examination that support this theory (Meggs

& Cleveland, 1993).

Other Theories

Other theories on the cause of MCS involve depleted enzyme systems.

We know, for example, that particular pesticides are designed

specifically to damage enzymes. The organophosphate pesticides (nerve

poisons that were used widely in World War II as chemical warfare

agents) knock out acetylcholinesterase needed to break down the

neurotransmitter acetylcholine. When too much acetylcholine builds up

between the nerve cells bugs die of convulsions. Unfortunately, the

human nervous system contains many of the same neurochemicals as

bugs, including acetylcholinesterase. People can suffer a number of

severe problems from cholinesterase poisoning including nausea,

vomiting, abdominal cramps, frequent and/or involuntary defecation

and urination, wheezing, visual disturbance, weakness, fatigue, and

muscle cramping or twitching. People can suffer delayed neurological

damage that may include disturbances in sensory experience, motor

function, speech, sleep, and emotional stability (Sherman, l995).

Some people have also developed MCS following an organo-phosphate

pesticide exposure. The mechanism of how organophosphate exposure

causes chemical sensitivities is unclear, but probably involves

residual brain damage of some sort.

Albert Donnay (1999) of MCS Referral and Resources has proposed that

carbon monoxide exposure is a cause of MCS. There are historical

descriptions of ill health that resemble MCS. This theory has

prompted some physicians to experiment with oxygen treatments, which

are useful in acute carbon monoxide poisoning, in patients with MCS.

A large number of chemicals, particularly solvents, are known to

cause neurological damage. Painter's syndrome is a condition that

afflicts old painters who have a long history of exposure to paints

and solvents. Neurological examinations of workers exposed to

solvents reveal a variety of neurological abnormalities including

problems with memory, attention and learning, as well as

psychological symptoms. Morrow at the University of Pittsburgh

and colleagues have published a number of studies in this area

(Morrow et al., l990). Exposures to solvents have also preceded the

development of MCS in some people.

Because the problem of electrical sensitivities has not been

researched as much as MCS, theories on how it develops are lacking.

It has also received less attention from writers and health

practitioners.

PREVALENCE

The earliest estimation of how many people have MCS came from the

National Academy of Sciences, which suggested that 15% of the

population has sensitivities to common chemicals. Meggs and

colleagues (l996) did a household population study and found that

about one third of the population reported having sensitivities to

chemicals. Chemical sensitivity affected persons of all ages,

incomes, races, and educational levels. A little under 4% reported

becoming ill every day from sensitivities. Two state health

department studies have found similar results. In New Mexico, 16% of

people reported being sensitive to chemicals, 2% had been diagnosed

as having MCS, and sensitivities had caused 2% to lose a job or

career. In California, almost 16% of adults were chemically sensitive

and 6.3% had been diagnosed with MCS or environmental illness

(Kreutzer, l999). If Meggs and colleagues are correct that 4% of the

U.S. population is becoming ill every day from chemicals, this means

that over 11 million people have moderate to severe MCS. MCS

currently is not included in disability databases and will add

substantially to the commonly cited figures of 43 to 48 million

Americans with disabilities (NIDRR, l999).

Consumer and volunteer samples to date are all approximately 80%

women. But, population studies such as the Meggs study find a smaller

majority for women with about a quarter of men and over a third of

women reporting illness from chemicals. We don't really understand

why more women than men may be affected, but there are several

suggestions.

Women are more susceptible to auto-antibody and autoimmune illness

and chemicals induce auto-antibodies. Women have less of an enzyme

that detoxifies both alcohol and chemicals called alcohol

dehydrogenase (Freeza et al, l990). Women are also smaller on average

than men, have a higher respiration rate, and may be more vulnerable

to hormone-disrupting chemicals (many toxics are estrogen disrupters.)

MCS is not limited to North America. Researchers have identified

chemical sensitivity in several Northern European countries and in

Greece (Ashford et al., l995).

Electrical sensitivities were addressed by the California Department

of Health Services in the l998 California Adult Tobacco Survey and

found to affect 3.3% of 2,072 adults surveyed (Levallois et al.,

2000). But because this research was conducted via telephone, and

people with electrical sensitivities often cannot use the telephone,

it probably underestimates the numbers. Even so, the 3.3%

extrapolates to 8 million Americans having ES.

CULTURAL RESPONSE

Our cultural response to MCS has been almost entirely negative.

People with this primarily invisible disability have been ignored, de-

legitimized, dropped as friends, discriminated against in the

workplace, fired from their jobs, and excluded from housing and

medical care. Although there are some agencies that either recognize

MCS or are attempting to incorporate it to some extent into their

programs, for the most part the problem has been ignored. There has

been no concerted attempt on the part of the medical community to

learn about MCS. Although practitioners of environmental medicine see

Theron Randolph as a mentor and deal primarily with MCS patients in

their practices, they too suffer discrimination from the greater

medical community because of this.

My framework for understanding MCS after nine years of research is

this: MCS is an illness that is caused by industrialism, it is an

indictment of industrial culture because it directly points to

chemicals as a cause of disability, and it is totally incongruent

with industrial culture. We are a culture that does " risk assessment "

of each of our chemicals allowing a certain number of people to get

sick or die from exposure to each chemical. While the EPA continues

to compile lists of cancer causing agents, the field of health

psychology continues to look for the " cancer personality " that

supposedly renders some persons more psychologically prone to the

development of cancer. We are experts at ignoring the obvious. While

babies on the U.S. - Mexico border are born without brains, our

industries continue to dump wastes into the air and water of that

geographic region. Our institutions are created out of the same

industrial paradigm that allows this contamination, and are therefore

not only not positioned to respond in any constructive way, but are

in many cases set up to deny and distort the reality of chemical-

induced disability. This cultural set-up makes for personal struggles

in a number of venues.

HOW TO HELP

Understand the person's need to meet in a very clean environment. Try

to provide a setting free of fresh paint, pesticides, smoke, perfume,

forced air petrochemical heat, chemical cleaners, and other toxics.

Ask the person exactly what incitants she or he needs to avoid. As an

accommodation, it may be necessary to speak by phone or go to the

person's home if getting to the center and surviving the environment

there will be a hardship. If you go to the home of a person with MCS

please follow any procedures requested by the person regarding what

to avoid on your person, despite how odd the request might sound to

you. The person might request no fragrance or hair spray, no freshly

dry-cleaned clothes, no mothball fumes on clothes, no exposure to

cigarette smoke that can be carried on clothes, or some other

procedure to avoid what we call secondary exposures. Your clothing

and hair pick up smoke, perfume, and other chemicals when you

encounter them, and someone who is extremely sensitive can react to

you because you are carrying these chemical fumes.

Understand that if the person has electrical sensitivities, he or she

will have problems with a number of devices that are probably in your

agency including battery re-chargers, oxygen concentrators, air

filters, any electrical monitoring equipment, fluorescent lighting,

and computers. You may have to turn off lights and unplug some

equipment in order for these people to have access to your facility.

Provide an accepting and supporting attitude. By the time the person

makes it to your agency, he or she has endured enough rejection for a

lifetime. Try to eliminate any attitude you might have about MCS not

being a 'real' disability. (This is usually fairly easy once you hear

about the person's life experiences.)

Learn as much as you can about MCS and what people with MCS say about

having it. They are the best source of information. The rest of this

book is devoted to helping you understand their personal struggles

with this disability.

Chapter 2

The Health Care Challenge in MCS

Obtaining medical care for the person with MCS can be a severe

struggle for a number of reasons. Most medical, psychiatric, and

rehabilitation facilities are inaccessible to people with this

disability and health practitioners are usually uninformed about the

condition. The conventional medical community has not recognized MCS,

and has even attempted to censure and intimidate those physicians who

do attempt to work with people with this problem. There is no

training regarding MCS in medical schools, therefore, most physicians

are unfamiliar with it. There is, however, a branch of medicine that

does treat MCS. The work of Theron Randolph (mentioned in the

previous section) evolved the field of Environmental Medicine.

Randolph did groundbreaking clinical work and found that many of his

patients were allergic/sensitive to heating fuels, gas cooking

emissions, and other environmental pollutants. He was then able to

train other physicians and is the mentor of many of the environmental

physicians practicing today. Some people with MCS seek help from

these practitioners, although they are sparsely located and can be

very expensive. Many with MCS report great benefit from this approach

to treatment.

The field of environmental medicine espouses several basic concepts

that can be helpful if you work with people with MCS or electrical

sensitivities. Chemical sensitivity is seen as developing in two

stages that of induction and then triggering. In induction, one large

chemical exposure, or perhaps an ongoing more moderate one can damage

the nervous system and/or immune system causing the person to become

sensitized to the chemical in question. Persons with electrical

sensitivities report that the condition seems to be initiated in much

the same way - with a significant exposure to electromagnetic

radiation or fields. Further exposure to that substance then triggers

symptoms (the triggering phase). If a person with MCS is exposed to

one substance at a time it is fairly easy to determine cause and

effect. But if the person has multiple exposures, simultaneously or

back to back (which is often the case), it is very difficult to

pinpoint what is causing the reaction and the person just feels bad

continually. This is called masking. If a person lives in a house

that is not safe for him or her, there will be continual symptoms,

but their relation to the house may not be clear. The way to unmask

is to stop the exposures. The person whose home is in question can go

to a safer locale for 4-5 days. Upon return to the home, the

symptomatic reaction is then likely to be very dramatic if the home

is not safe. Although this is uncomfortable, it is one way of

identifying unsafe triggers. Because MCS tends to demonstrate the

spreading phenomenon where sensitivities develop to other chemicals

in the family of the original sensitizer and then to unrelated

exposures, the person is faced with a repeated need to sort out the

sources of his or her adverse reactions.

Another important concept of environmental medicine is called total

load. The total load concept says that your body can only tolerate so

many exposures before it reaches its limit, " filling up " with too

many irritants. Patients of environmental medicine are urged to keep

their exposures to chemicals, allergic foods, electromagnetic fields,

microwaves, molds, and other inhalant allergens to a minimum in order

to minimize stress on the body. Avoiding exposures is seen as being

the best method of improving health. Patients are encouraged to clean

up their homes and to create a special " oasis " in their bedroom where

their exposures will be as minimal as possible in order to have a

place to clear out and heal after receiving outside exposures. The

oasis should be sparsely furnished with no carpeting, pesticides,

petrochemical heat, fresh paint, mold, dust, or books, and perhaps

even no clothing to minimize dust. Ideally, bedding should be all

natural, but many people with MCS have been able to tolerate aired

out camping mattresses. People with electrical sensitivities are

urged to avoid electromagnetic fields and shield themselves from

those that cannot be eliminated (e.g., many shield their computers).

Their bedrooms should have no fluorescent lighting, computers,

clocks, or other electrical appliances. When going out in public some

people with ES wear ear protectors or even helmets or aluminum foil

on their heads to protect against magnetic fields.

Practitioners of environmental medicine use testing techniques that

conventional physicians consider controversial. In

provocation/neutralization testing the person is challenged with very

small amounts of various triggers (foods, chemicals, molds) either

subcutaneously (under the skin) or sublingually (under the tongue),

and symptoms are elicited right in the medical office. A diluted dose

of the same antigen is then used to neutralize the reaction. People

who have fairly stable reactions (that is the amounts of antigen

needed to neutralize do not change often) are seen as good candidates

for P/N testing and neutralization.

Some drawbacks of environmental medicine are that these practitioners

are expensive and sparsely located. Note that even these

practitioners may not use the diagnosis of MCS or ES. Because of the

lack of general acceptance by the insurance industry for the

conditions, they may list other diagnoses such as asthma or

porphyria, in order to obtain reimbursement. They may also want to

avoid controversy due to the harassment that is often directed toward

physicians who work with people with MCS and electrical

sensitivities.

Most people do not have an environmental medicine practitioner easily

accessible to them and must primarily depend on conventional doctors.

Finding one who will seriously consider chemical sensitivities is not

an easy task. Even if a person does locate a cooperative

practitioner, often the office is inaccessible due to the presence of

petrochemical heating systems, pesticide use, perfumes on medical

personnel, unsafe building materials, and, for those with electrical

sensitivities, cellular phones, fluorescent lighting, and electrical

equipment. Consequently, people not only lack treatment for their

sensitivities, but are forced to neglect routine and preventive care

that others in an industrial culture take for granted. This includes

routine check-ups, mammograms and dental cleanings. Consequently

people with MCS are at risk for other health problems that could be

better treated if detected early. In addition to the inaccessible

office, chemically sensitive people have the realistic fear of having

adverse reactions to medical treatments such as anesthesias,

medications, dyes used in x-ray testing, and others. People therefore

tend to avoid dental procedures, elective surgeries, and any invasive

testing. One woman in my study chose to suffer for two years with an

abscessed tooth rather than be exposed to anesthetics. Others told me

that they went without anesthetics for procedures that really need

them such as having cysts removed, having root canals and teeth

pulled, and invasive tests.

People with electrical sensitivities avoid medical treatment because

they also are likely to be so harmed by the exposures (in this case

to the electrical equipment) that the visit isn't worth the risk. In

addition, their symptoms may be altered completely if they are

observed while exposed to electrical fields. So people with MCS or ES

are having a hard time getting any medical care, even that unrelated

to their sensitivities.

The flip side of the lack of care, however, is often a desperate

search by people with MCS and ES for answers and treatment for their

sensitivities. People experiment with both conventional and

alternative therapies. Many deplete their finances and even incur

debt paying for treatments that are not helpful. The 917 people in my

recent treatment study had seen an average of twelve health

providers, but described only three as helpful. They had spent an

average of $51,000 on total health care since their illness began,

$7,000 of it in the past year. This amounted to over one-third of

their annual personal income going to health care costs.

Respondents had used an average of over 30 treatments. People who

were more disabled had tried more treatments than those more mildly

affected. People tended to use about 10 nutritional supplements,

several environmental medicine techniques such as creating an oasis

or safe living space, and 2 or 3 different therapies in each of the

categories of holistic therapies, body therapies, and prescription

items. Respondents saw creating a chemical-free living space,

chemical avoidance, and prayer as being the most effective

interventions. Both creating a chemical free living space and

chemical avoidance were rated by 95% of people as helpful. Other

therapies rated as highly effective included rotation diet, air

filters to reduce exposures, personal oxygen to cope with exposures,

acidophilus supplements, acupressure, touch for health, reflexology,

moving to a safer location, and meditation (Gibson, Elms, & Ruding,

2001).

Many people with MCS experience harm from medical care due to

unnecessary, inappropriate, or delayed medical treatments. People in

my research were given inappropriate drugs, had long delays in

diagnosis, were treated for the wrong conditions, were given

unnecessary invasive medical tests, had one or more unnecessary

surgeries, and were even inappropriately given shock treatments.

Mental health practitioners were not any more helpful. Although 70%

of my survey participants saw mental health providers, most of these

providers were reportedly not helpful. To the contrary they often

caused harm by ignoring patients' chemical sensitivities,

inaccurately giving psychiatric labels, drugging people, or

suggesting psychiatric hospitalization. And 15% of those who saw

mental health providers were actually hospitalized. They suffered

further harm from exposures to chemicals and EMFs in the institutions

and had to deal with the loss of life control imposed by the

psychiatric system. People with electrical sensitivities may have an

especially difficult time in psychiatric institutions given the

stereotype of the mentally ill person complaining about radio waves.

Persons with ES will likely be ignored when they ask their doctors to

turn off cell phones, motors, and other equipment, as will people

with MCS who ask not to be exposed to perfume, cigarette smoke,

pesticides, and cleaning products.

Finally the person with MCS or ES has to face that there is no real

cure for their sensitivities. Although some treatments are rated

fairly highly, they usually only help reduce but not eliminate

symptoms. The treatment studies suggest that most treatments actually

help no more that about 25% of people and cause harm to others. That

is, there is no magic bullet for MCS. Some treatments are in fact

consistently rated as being more harmful than helpful by people with

MCS. Psychotropic drugs such an anti-depressants as well as anti-

anxiety medications like valium are rated poorly. In general the non-

toxic, less intrusive therapies are rated better than any chemical

therapies or very expensive " designer " nutrients. But people should

consult the studies, talk to their doctors, and make their own

decisions as to what to try. Repeated unsuccessful interventions can

be a costly and demoralizing experience. As hard as it may seem, one

should always keep in mind that a new therapy may not work. This is

not always easy when a situation seems desperate, as is often the

case. Consequently, I've seen many people go into debt to try new and

expensive treatments, only to become sicker from the process and be

financially drained besides.

People with MCS have different philosophies as to whether

sensitivities are permanent or not. Some believe that there is a

treatment out there for them and they just need to find it. Others

believe that there is no real cure for MCS, and that simply trying

every therapy that comes along is a waste of time, energy, and money.

This group tends to believe that one has to accept MCS as a long-term

disability and learn to live with it. This doesn't mean that they

give up or stop judiciously trying to improve. But they believe that

the desperate search for a cure is a distraction from adjusting to

having a disability. Accordingly, by the time some people come to the

Center for Independent Living for help, their enthusiasm for medical

treatment may have waned. As their advocate you will have to respect

the persons' right to choose what treatments to pursue.

HOW TO HELP

Collect and share names of any supportive physicians who have helped

other people with MCS or electrical sensitivities. If people want to

find a practitioner of Environmental Medicine they can contact the

American Academy of Environmental Medicine for a practitioner near

them. American Academy of Environmental Medicine (AAEM), American

Financial Center, 7701 East Kellogg, Suite 625, Wichita, Kansas

67207. Phone: 316-684-5500. Web site: www.aaem.com

The Chemical Injury Information Network (CIIN) can provide a list of

physicians that work with people with MCS. The list includes

practitioners of Occupational Medicine, Immunotoxicology,

Environmental Medicine, and other specialties. CIIN can be contacted

at PO Box 301, White Sulphur Springs, MT 59645. Phone: 406-547-2255.

E-mail: chemicalinjury@.... Web site: www.ciin.org

Books on Environmental Medicine

The basic tenets of Environmental Medicine are explained in T. G.

Randolph, and R. W. Moss. 1982. An Alternative Approach to Allergies.

New York: Harper & Row. The book describes Randolph's work with

chemically sensitive patients as early as the 1950s and includes many

case studies.

Books by Sherry , M.D.: From Prestige Publishing, P.O. Box

3161, Syracuse, NY 13220:

, S. 1986. The EI Syndrome. Syracuse, NY: Prestige Publishing.

, S. 1990. Tired or Toxic? Syracuse, NY: Prestige Publishing.

From Publishing, Inc., 7811 Montrose Road, Potomac, MD

20854. 1-800-301-8970.

, S. 1997. Are Chemicals Making Me Sick? A Primer on Chemical

Sensitivity.

, S. 1997. Dr. ' Solutions to Common Medical Problems.

, S. 1997. Why Am I So Tired? Dr. ' 60-Day Plan to Boost

Your Energy. From SK Publishing, P.O. Box 40104, Sarasota, FL 34242.

Phone: 1-800- 846-ONUS:

, S. 1994. The Scientific Basis for Selected Environmental

Medicine Techniques.

, S. 1997. Depression: Cured at Last.

Detoxification

The following book by an environmental physician is a comprehensive

guide to detoxification:

Krohn, J., F. A. , and J. Prosser. 1996. The Whole Way to

Natural Detoxification. Point , WA: Hartley & Marks.

Share the following 4 treatment studies.

Gibson, P. R. (2000). Treatment data reported in chapters 6 and 7 of

Multiple chemical sensitivity: A survival guide. Oakland, CA: New

Harbinger Publications.

Gibson, P. R., Elms, A., & Ruding, L. (2001). Self-reported treatment

efficacy in 917 persons with multiple chemical sensitivity. Paper

presented at the Chemical Injury Information Network MCS Conference,

August 13-15, Sante Fe, NM.

, A. 1996-1998. MCS Information Exchange Newsletter. November

8, 1996; March 20, 1997; September 19, 1997; February 13, 1998.

Brunswick

, S. 1986. The EI Syndrome. Syracuse, NY: Prestige Publishing.

, S. 1990. Tired or Toxic? Syracuse, NY: Prestige Publishing.

From Publishing, Inc., 7811 Montrose Road, Potomac, MD

20854. 1-800-301-8970.

, S. 1997. Are Chemicals Making Me Sick? A Primer on Chemical

Sensitivity.

, S. 1997. Dr. ' Solutions to Common Medical Problems.

, S. 1997. Why Am I So Tired? Dr. ' 60-Day Plan to Boost

Your Energy. From SK Publishing, P.O. Box 40104, Sarasota, FL 34242.

Phone: 1-800- 846-ONUS:

, S. 1994. The Scientific Basis for Selected Environmental

Medicine Techniques.

, S. 1997. Depression: Cured at Last.

Detoxification

The following book by an environmental physician is a comprehensive

guide to detoxification:

Krohn, J., F. A. , and J. Prosser. 1996. The Whole Way to

Natural Detoxification. Point , WA: Hartley & Marks.

Share the following 4 treatment studies.

Gibson, P. R. (2000). Treatment data reported in chapters 6 and 7 of

Multiple chemical sensitivity: A survival guide. Oakland, CA: New

Harbinger Publications.

Gibson, P. R., Elms, A., & Ruding, L. (2001). Self-reported treatment

efficacy in 917 persons with multiple chemical sensitivity. Paper

presented at the Chemical Injury Information Network MCS Conference,

August 13-15, Sante Fe, NM.

, A. 1996-1998. MCS Information Exchange Newsletter. November

8, 1996; March 20, 1997; September 19, 1997; February 13, 1998.

Brunswick, ME: MCS Information Exchange. MCS Information Exchange, 2

Oakland Street, Brunswick, Maine 04011.

Leroy, J., T. H. , and L. A. . 1996. Treatment Efficacy: A

Survey of 305 MCS Patients. The CFIDS Chronicle: Winter, 52 53.

Chapter 3

THE EMPLOYMENT CHALLENGE IN MCS

Another great stressor in MCS is that of work. In my life disruption

study, less than a third of the MCS participants were still working

outside of the home. Sometimes it was the workplace that caused the

person to develop MCS to begin with. Over half of those who reported

an initial known exposure that damaged their health reported that it

occurred in the work environment. When work causes the MCS, the

situation is made worse by the fact that the worker is faced with

compensation and liability issues at a time when their personal

resources are at a very low ebb.

HOLDING ONTO EMPLOYMENT FOR THOSE WITH MCS

Even if work was not the initiating exposure, the person may find

that s/he now is made sick by exposures to any number of workplace

toxics including pesticides, new carpet, paint, copy fumes,

fragrances on co-workers, petrochemical heat, or electromagnetic

frequencies. By the time a person comes to the Center for Independent

Living for help, his or her employment situation is most likely at

crisis level. When a person asks for workplace accommodations, there

is often resistance from both co-workers and superiors. If colleagues

are uneducated about MCS or get their information from misguided

sources, they are unlikely to be sympathetic or helpful.

Unfortunately, people with MCS have been harassed in the workplace,

including the extreme measure of persons intentionally exposing them

to toxics. Persons in these kinds of situations are therefore likely

to be suffering considerable upset around the issue of work.

If the person has continued to try to work without accommodations, he

or she may have deteriorated in health, and, as a result, may now no

longer be able to work at all. People who are the primary income

earners in families may be most at risk for this because they feel a

responsibility to provide for their loved ones. Employment should be

preserved whenever possible in order for persons to maintain their

income, benefits, work-related self-esteem, contacts with other

people, and sense of being productive. But for most people with MCS,

this cannot be accomplished without accommodations. Being familiar

with disabilities in general and the ADA, you are in a position to

help the person write a Request for Reasonable Accommodation. The

request for accommodations should be in writing and accompanied by a

physician's letter if possible. In this legal document the person can

request the workplace adjustments that will limit workplace exposures

to toxics and allow the person to perform her or his work. It will

also hopefully halt or slow the spreading phenomenon and help

maintain the worker's level of health.

Some workplace changes, such as using an air cleaner, can be done by

the individual without help from the workplace. People can also

unplug or turn off equipment and lighting in their personal workspace

if they emit electric or magnetic fields that trigger their symptoms.

Changes that can be requested from the workplace include the use of

less toxic cleaners, a reduction in fragrance on co-workers, less

toxic pest management, and notice regarding any painting or

construction. Changing airflow and heating is more difficult although

it is certainly reasonable to ask that HVAC systems be cleaned and

maintained properly. If the workspace is taking in toxicants from

other parts of the building, or the air quality is poor for other

reasons, the person may have to ask to relocate her or his office.

Accommodations are more difficult to obtain for common areas than for

a personal workspace. For example, it may be difficult to talk

employers into discontinuing the use of " air fresheners " in the

bathrooms. The employee will likely have to do the research and

suggest product changes such as using baking soda or fragrance-free

kitty litter, changed on a regular basis. Citrus-based air fresheners

are another possibility but are not tolerated by most people with

MCS.

People should probably be judicious, asking for only what they really

need. An employer does not have to make an accommodation that imposes

an " undue hardship " on the operation of the business or organization.

Undue hardship means " significant difficulty or expense " when taking

into account (on a case-by-case basis) the structure and resources of

the institution or workplace.

Employers are able to make many MCS accommodations with little

expense. Limiting smoke and perfume in the workplace, using less

toxic air fresheners or paints, providing an air cleaner for

employees, and using less toxic bug control are all reasonable

strategies for reducing workplace toxics. The employee may want to

use the booklet Multiple Chemical Sensitivities at Work: A Training

Workbook for Working People by the Labor Institute (1993) as a

workbook for possible accommodations for those with MCS. Some

suggestions for accommodations are listed below. If the employee does

receive some cooperation, she or he then needs to stay abreast of

plans for remodeling, repairs, and pest control so that she or he can

suggest less toxic alternatives and/or avoid the toxic exposures

that may be associated with these activities.

Potential Workplace Accommodations for MCS:

1. Provide a workable window that opens for ventilation.

2. Reduce fragrance on co-workers.

3. Replace toxic pesticides with less toxic alternatives, such as

using flyswatters or using boric acid for ants and roaches.

4. Initiate flexible work hours that allow the employee to leave

during potential chemical exposures (e.g., painting) and/or to work

during off-hours to avoid photocopy and other office fumes, or rush

hour traffic.

5. Provide notification of impending pesticiding, painting, and

construction.

6. Use nontoxic fume-absorbing substances, fans, or windows instead

of chemical " air freshener " in bathrooms.

7. Relocate the employee to a safer part of the building.

8. Provide an air cleaner for the employee's work area.

9. Vent the photocopy machine to outside the building.

10. Use unscented less toxic cleaners as replacements for ammonia,

solvent, phenol, or chlorine-based solutions.

11. Delegate errands to toxic areas, such as photocopying and other

small nonessential tasks, to an employee who does not have chemical

sensitivities.

12. Minimize the amount of time the employee spends under fluorescent

lights or in the vicinity of transformers, electric cables,

computers, or other electromagnetic field sources that trigger

symptoms.

When The Person With MCS Can No Longer Work

Sadly, many persons with MCS fail in their attempt to maintain

employment. Three-quarters of people in my life impact study had lost

or had to quit their jobs because of their MCS. In fact only 7% were

working in conditions that they considered safe for their health at

the time of the study. People with electrical sensitivities, in

particular, may be unable to alter a workplace enough for their

safety given the widespread presence of EMF-emitting technology.

Many people with MCS have become so sensitive to chemicals that they

can no longer work even with accommodations, or they may be unable to

work in their chosen field because of the toxic nature of the work.

Hairdressers, chemists, painters, and exterminators who develop MCS

probably cannot continue or resume their careers, even with

accommodations.

Helping the person with MCS with alternative employment or

compensation is another big challenge for advocates. Some people are

able to seek alternative employment in a safe workplace environment

or make some income from a small home-based business, but many are

unable to work at all. I f work is lost, the personal consequences

are often severe. Loss of work in combination with escalating housing

and medical costs easily leads to financial ruin. As a result of

their MCS, people in my life impact study reported that they had lost

almost $18,000 per year of their incomes. They now earned on average

about $12,000, much of which was disability compensation. They had

also lost their health insurance and

retirement benefits.

The loss of work deprives the person of their former role and contact

with co-workers, and forces an isolation that can lead to depression

and despair. One nurse in my study mourned that her disability had

robbed her of her opportunity to help others even though she had the

training and the empathy to do so. If the workplace extrudes rather

than accommodates the worker, the person disappears into a hidden

group of people with invisible disabilities and business goes on as

usual.

GETTING COMPENSATION FOR MCS

As an independent living advocate, you are in an excellent position

to understand private and public disability benefits. But

unfortunately, obtaining benefits for MCS is extremely difficult.

Even if an employee has private disability insurance, conditions

resembling MCS may be excluded. In addition, some companies

discriminate between physical and mental conditions, limiting

benefits for mental conditions to two years duration. So even if the

employee does succeed in obtaining private disability compensation,

if the company can get the employee's condition labeled as a mental

one (either initially or after a period of compensation), then

benefits can be of limited duration. An additional obstacle to

obtaining benefits is private insurers' use of " expert " witnesses who

they hire to testify for employers against people applying for MCS

compensation.

Social Security Disability Benefits are also difficult to obtain. The

person with MCS is usually faced with the task of convincing people

who know nothing about MCS that they are unable to engage in gainful

employment anywhere. Examiners have a difficult time understanding

why the person cannot " perform other work in the national economy. "

People must be able to demonstrate or explain that they a) become

debilitated by common chemical exposures, and have no control over

these exposures that depend upon other people's behavior. People in

my studies reported using creative strategies to convince examiners

and judges of their problem such as videotaping themselves during a

reaction or having friends testify as to their health and behavior

both before and after developing MCS. Since examiners must use " all

relevant medical and non-medical evidence, " these strategies are

acceptable. SSA's listing of impairments includes over 150 categories

presumed to meet the severity test for acquiring benefits. MCS is not

on it and, being unlisted, must be the " medical equivalent " of one of

the listings. Criteria for mental impairments are more subjective and

focus more on subjective evaluation of the person's functional

limitations than those for physical impairments, which are supposed

to be documented more by medical fact. Although there are conditions

that must be assessed by functional limitation, e.g., musculoskeletal

conditions, awards for these conditions are infrequent. MCS falls

into the category of impairment that is difficult to document by

medical fact, and therefore the person MUST prove functional

limitation.

Half of the people in my initial study had applied for disability

benefits. Of the 151 who applied, 104 described the process to us (75

women and 29 men). Of these 104 people, 51 had filed once, 22 twice,

28 three or more times. Fifty-nine participants had been awarded

disability benefits, 13 were denied at the time of the study, cases

for 31 individuals were still pending, and one response was unclear.

Of the 59 people who received disability income, 29 were awarded

benefits on the first petition. It cost people an average of $2,060

to go through the process, took an average of twenty-three months to

complete, and resulted in an average award of $12,702. Because MCS is

so poorly received, people used a number of labels in their

application process: MCS-related labels such as multiple chemical

sensitivity, environmental illness, toxic encephalopathy, and sick

building syndrome were used by 48 people; other diagnoses by 23 (even

though MCS was their primary health problem); and a combination of

MCS and other labels by 29 applicants. Other labels combined with MCS

included psychiatric problems (n=11), respiratory illness (n=10),

musculoskeletal dysfunction (n=7), chronic fatigue immunodeficiency

syndrome (CFIDS) (n=5), immune disorders (n=4), circulatory problems

(n=3), gastrointestinal disorders (n=3), and others (n=17). Medical

evidence used for documentation included blood work, brain scans,

allergy tests, and neuropsychological examinations, among others.

The 60 people who used attorneys had to search diligently for someone

educated about MCS. One woman approached over twenty lawyers, none of

whom would accept her case. People were granted disability under the

following labels:

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.

HOW TO HELP

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.

Chapter 4

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 ,

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

(, 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.

HOW TO HELP

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@...'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@...; 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 , 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 , WA:

Hartley & Marks.

Stein, D. 1994. Least Toxic Home Pest Control. Revised Edition.

Summertown, TN: Book Publishing Co.

, 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.

Chapter 5

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.

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.

HOW TO HELP

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, 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.

SELF AND IDENTITY IN MCS

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.

HOW TO HELP

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.

Conclusion

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

Madison University

MSC 7401

onburg, Virginia 22807

540-568-6211, ext. 6195

gibsonpr@...

About the Author

Pamela Gibson, Ph.D. is Associate Professor of Psychology at

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.

2002 ILRU

2323 S. Shepherd, Suite 1000

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713-520-0232 (V)

713-520-5136 (TTY)

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ilru@...

IL NET Director:

Petty

Design:

Kaye Beneke

ILRU Publications Team:

Carri , Dawn Heinsohn and Rose Shepard

Substantial support for development of this publication was provided

by the Rehabilitation Services Administration, U.S. Department of

Education. No official endorsement of the Department of Education

should be inferred.

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.

ILRU is a program of The Institute for Rehabilitation and Research

(TIRR), a nationally recognized, freestanding medical rehabilitation

facility for persons with physical and cognitive disabilities. TIRR

is part of TIRR Systems, which is a not-for-profit corporation

dedicated to providing a continuum of services to individuals with

disabilities.

This guide may be reproduced for noncommercial use without prior

permission if the author and ILRU are cited.

The mission of the IL NET is to provide training and technical

assistance on a variety of issues central to independent living today-

-understanding the Rehab Act, what the statewide independent living

council is and how it can operate most effectively, management issues

for centers for independent living, systems advocacy, computer

networking, and others. Training activities are conducted conference-

style, via long-distance communication, webcasts, through widely

disseminated print and audio materials, and through the promotion of

a strong national network of centers and individuals in the

independent living field.

Substantial support for development of this publication was provided

by the Rehabilitation Services Administration, U.S. Department of

Education. The content is the responsibility of ILRU and no official

endorsement of the Department of Education should be inferred.

ILRU is a program of TIRR (The Institute for Rehabilitation and

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for persons with disabilities.

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