Environmental illness

Total frequencies of environmental illness are difficult to measure. When causes can be identified, however, scientists observe that frequencies of occurrence of a particular illness vary directly with the severity and extent of exposure. Particularly frequent in the workplace are skin lesions from many different causes and pulmonary diseases related to the inhalation of various dusts, such as coal dust (black lung), cotton dust (brown lung), asbestos fibers (asbestosis), and silica dust (silicosis). Environmental agents can also cause biological effects without overt clinical illness (for example, chromosome damage from irradiation). 

In 1991 I became coordinator of the support group I am now a PR chair and editor of its newsletter. I ve done national radio talk shows. I write letters. That s the way I cope. There s hardly a day when I don t do something for people with environmental illness and MCS. I really function as a servant, serving people. I never wanted to be a social worker, but I find I m often functioning as one, albeit untrained. EI/MCS is an illness often ignored or attacked as fraudulent. Many of its victims fall into society s cracks, without adequate recognition or support. 

Although I didn t know what was happening to me at the time I was hit with this illness, I wasn t totally clueless about MCS. I had friends with environmental illness, but I had no idea of the gravity or the breadth of the whole thing. One woman couldn t come into my home because of mold in it. Another one mentioned problems she d had at work when the parking lot was resurfaced, and when coworkers wore perfume. But no one had told me that my laundry soap, or bleach, or body soaps could make me ill. The people I knew with MCS could still function in the world. I had it about as bad as it gets. 

I had been in the habit of networking by phone, so I used that skill to network with other people who were environmentally ill. I became friends with Randa, who was then living in San Francisco and was active in the MCS community. 

It really helps the process a lot if I have a sense of humor, if I can laugh at how unbelievably bizarre my life can be with MCS. I ve had to have my attendants wrap their heads in hats and plastic bags when the chemicals in their hair products made me ill. I knew one woman who asked her mother to wrap her head in aluminum foil. Then there was the time when a television news crew came to interview me, as a physician, for a feature on environmental illness. There I was, flat on my back in the backseat of my car with a camera in my face. I spoke in a calm, professional manner, as though it was perfectly normal to be living horizontally in my car. When that seems normal, you know you ve stepped over to the other side ... 

All my jobs were very physical, and I had a series of injuries that year. I had surgery for a groin injury, and it wouldn t heal. I went to numerous doctors and pain clinics, and finally went to Mayo Clinic for a month, where they put me on muscle relaxers, pain killers, steroids and twelve Advil a day. None of that made much of a difference, and probably set me up for my environmental illness. I was in such severe pain that I couldn t sit or walk. We had no idea what was wrong. 

I ve been told that my environmental illness and connective tissue problems may be partly caused by a metabolic problem. I m not getting nutrients to where I need them in my body. This year it s starting to affect the collagen of my skin. 

That spring I took a turn for the worse because I was reacting to molds and pesticides. On top of that, our friend s husband, who doesn t believe in environmental illness, came home, and he wore a heavy scent. My body just collapsed again with chronic fatigue. That time I was in bed again four months, unable to do anything. 

When I was so exhausted from living outside I tried to live in Estes Park, where I d be close to my doctor appointments. I relied on body work—and still do—to keep my body functioning. But the place I moved to didn t work at all. That s when I called an environmentally ill woman I d heard about in Santa Fe and asked her if I could rent a room in her house. It was a stab in the dark. I couldn t believe it when she said yes. I lived like a recluse in that house on a lake twenty minutes out of town. Came into town for doctor appointments several times a week. That s when I really started to get well. I think it helped me enormously to have a stable, safe place to live for the first time in years. I also started a new treatment program, doing a lot of energy work. 

When a person with MCS is subjected to ongoing chemical exposures by the people they live with or near—like in an apartment complex or in their own home—that person is being subjected to domestic assault, to the degree that the exposures are intentional or negligent. It s very demeaning and it undermines the confidence of the person with chemical sensitivities in a way that s very similar to what happens to victims of conventional domestic abuse. The insults and blows happen to people with chemical sensitivities and environmental illness on a daily basis, sometimes on an hourly basis. 

Those fifteen years were very hard. I didn t have anyone I could really talk to and have them understand. I went for counseling during that time, to a psychiatrist for a short while and later to a social worker. They were lovely people but they had no appreciation of environmental illness. Whenever something happened that puzzled me, they would always come up with what seemed like a plausible reason. Now when I look back I know how foolish they were. For example, I remember coming away from one session feeling really good. It was a nice spring day and I drove home with the car... 

Throughout that whole period of fifteen years when we were so confused and bewildered about what had caused this horrific change in me, my husband always said, I know it s not in your head, I know it s real, and I know that, ultimately, we will find an answer. So I always had his support. But I had a lot of friends who bailed. My birth family never understood about environmental illness. They still don t. Two of my brother s children are mainstream physicians, graduates of Harvard Medical School, and they think I m a kook. 

I did for all those years before I started my sick school syndrome consulting business. I wound up doing a lot of writing about nutrition and food. That kind of laid the groundwork because then I had the facility for writing when I learned about environmental illness and sick building syndrome and sick school syndrome. 

Best Paint is a small Seattle company dedicated to producing safe paint products with a minimum of VOCs. Located in my neighborhood, this gem of a resource is owned and operated by co-founders John Pruitt and John Todd, two men who became chemically sensitive while working in the paint industry. Best Paint is advertised almost solely by word of mouth, and is carried only by a few retail outlets in Seattle special orders are shipped to environmentally ill consumers nationwide. The two owners are always busy making paint... 

I still didn t know the chemicals bothered me. The doctor kept telling me I had the flu. But I didn t have the flu. I went to see another doctor who understood environmental illness and MCS. She said, You have to quit your job now. Not tomorrow. Now. ... 

More and more chemically sensitive people contacted us when they became aware of our efforts, so we decided to form a group. We persuaded the Capital Regional District health officer to back us up in a survey to establish there was a population of people here with environmental illness. We thought there might be twenty-five or so people. But we heard from people way up-island and in the interior and Vancouver. We stopped at two hundred and fifty. Many wrote on their survey forms, You mean I m not the only one ... 

I want to spread the word about the dangers of environmental illness and about how easy it would be to prevent it. It s not a pipe dream. I ve seen it. I want people to know the best of what s happening around the world, and not accept anything less—in terms of environment, health care, human rights and disability rights. 

I found this idea very interesting as a public health issue. So I decided that I would start interviewing people who are environmentally ill. The people I interviewed included orchestra conductors, plumbers, accountants, chemists and painters. 

Probably the most powerful coping technique for folks with environmental illness is similar to the coping techniques for people in trauma. That is to have some control over your own emotional response. Some have a real visceral chemical reaction that affects their emotions, I understand that. But to be empowered in some way, to make decisions on your own behalf, to take some responsibility for shaping the world you live in—it works. To take charge of what you can do, even if it s a small thing to make your life just a little bit better. 

This is a particularly high-stakes struggle because, if environmental illness is recognized, we re going to have to rethink the way we consume things. And that s a major shift. There s a lot at stake there. A lot of stakeholders. 

It s a dangerous illness, politically, because it demands so much change. It s different enough that it s easy for some people to move it from the body to the mind. I hope my book is a corrective to some of the critics that are too ready to write this illness off as neurotic somatization. They re too ready to move it from the body to the mind. Environmental illness doesn t fit any of the hysterical contagion models that are out there, and there aren t any real secondary gains associated with this illness. 

Referrals to physicians who specialize in the treatment of environmental illness. 

National American Indian Environmental Illness Foundation... 

An Alternative Approach to Allergies The New Field of Clinical Ecology Unravels the Environmental Causes of Mental and Physical Ills. Theron G. Randolph and Ralph W. Moss. New York HarperCollins, 1990. Written by the first modern physician to diagnose and treat environmental illness. 

Chemical Sensitivity A Guide to Coping with Hypersensitivity Syndrome, Sick Building Syndrome and Other Environmental Illnesses. Bonnye L. Matthews. Jefferson, NC McFarland, 1992. 

M. D. New York Bantam Books, 1996. These two books are written by a renowned medical expert on children and allergies and environmental illness. 

Originally published as Als chemische stoffen en geuren je ziek maken Een naslagwerk over de onbegrepen milieuziekte MCS (When Chemical Substances and Scents Make You 111 A Reference Book about the Misunderstood Environmental Illness MCS) in the Netherlands in 2007 by Uit-geverij Schors, Amsterdam. 

You are about to learn more about an environmental illness which has been identified since the 1950s Multiple Chemical Sensitivity (MCS). 

MCS stands for multiple chemical sensitivity and is also known as CS (chemical sensitivity), Cl (chemical injury), El (environmental illness), TILT (toxicant-induced loss of tolerance), twentieth-century illness and IEI (idiopathic environmental intolerance). MCS is the most common term for this condition, and is used around the world. 

As a result of this difference there will always be people who react with greater sensitivity to chemical substances than does the average human being. It is impossible to predict in advance who will develop MCS, because the condition is also dependent on what substances and situations a person encounters during his life. Everyone could thus develop it. MCS is a typical environmental illness of this day and age. 

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