Canaries in the Coal Mine: Multiple Chemical Sensitivities, Myth Vs. Reality

Photo by Majd Mohabek via Flickr creative commons

Photo by Majd Mohabek via Flickr creative commons

When people find out that I am sensitive to the chemicals in everyday products, I almost invariably find that they believe one or more of the many myths surrounding MCS. First, what is MCS?  I’m constantly surprised by the fact that almost no one knows what I’m talking about when I use that acronym.  MCS stands for Multiple Chemical Sensitivity.  The Chemical Sensitivity Foundation defines it this way:

Multiple Chemical Sensitivity (MCS) is a medical condition characterized by a heightened sensitivity to chemicals. People who have MCS become ill when exposed to a variety of chemicals, many of which are commonly encountered in everyday life. Some people have only mild chemical sensitivities, while others have a more severe form of the illness called MCS.

Now that you know what it is, I imagine some of you are probably thinking, “Ooooh, I think I know somebody with that problem”.  With a lot of help from some of my fellow MCS sufferers, I have identified some of the more common myths associated with the disorder:

Myth #1:  People who say they have MCS really have chemophobia (fear of chemicals), anxiety, or depression and probably need psychiatric help (medication).

Most people who have MCS didn’t have any idea that everyday chemicals could be dangerous or cause life-long problems until they became ill.  Many didn’t find out what was making them ill for a long time, going from doctor to doctor looking for a solution.  Much of the time, it is not until a person begins to avoid chemicals that they begin to see the connection between their symptoms and the chemicals they had been exposed to.   It is possible that some people with MCS develop chemophobia, but it’s usually long after they have had many bouts with chemical-induced illness.

Some people with MCS do suffer from depression, but evidence suggests that the depression usually occurs after the onset of the illness, which would also suggest that it often results from the misery and social isolation of chemical sensitivity, and not the other way around.

Also, MCS causes physical illness.  It is known that physical illness is very often accompanied by mental illness.  The brain is a physical organ which, like any other organ, can be affected by toxins and disease processes.  Many of the toxicants which make us ill are known neurotoxins, which could also explain much of the anxiety and depression experienced by people with MCS.

Because of liver-function abnormalities often seen in people with MCS and a general hypersensitivity to many different chemicals, psychiatric medications are often not well-tolerated and are most definitely not a cure-all solution to this problem.

Myth #2:  People with MCS should just take antihistamines or allergy shots so they can live more normally and not have to avoid contact with common chemicals.

Standard allergy treatments often fail with MCS.  That is because the disease mechanism appears to be different from what happens in allergic illness.  In a true allergic reaction, the immune system begins to tag harmless substances as harmful invaders.  That sets off all the classic symptoms of allergies: sneezing, runny nose, coughing, hives, etc.  Many people do react in that way to chemicals, in which case allergy treatment may be beneficial.  But many others react in ways that are not typical of an allergic reaction.  Often, neurological symptoms such as pain, dizziness, brain fog, slurred speech, and tremors  are dominant.  These types of reactions will often not respond to common treatments for allergies.

Myth #3:  Common personal care and household products are mostly harmless and people with MCS are just hysterical.

Environmental Working Group would beg to differ.  They have created several databases including the Skin Deep Database which exposes not only the ingredients of common products, but also their potential toxicity to humans.  Many of the most commonly used household and personal care products listed received an F on a scale of A to F, F being a “fail”, or most dangerous. – Test your knowledge of cosmetics safety: 8 myths debunked

Myth #4:  People with chemical sensitivities just have a strong sense of smell and are bothered by odors. 

People with MCS can often react to odorless chemicals, so it’s not about the smell.

“… It should be clear … that chemicals in MCS are not acting on the classic olfactory receptors (15,16), but rather are acting as toxicants. This is opposite many published but undocumented claims that MCS is a response to odors. There is additional evidence arguing against the view that MCS is a reaction to odors. MCS sufferers who are acosmic, having no sense of smell, people who have intense nasal congestion and people whose nasal epithelia have been blocked off with nose clips can all be highly chemically sensitive (1,4). This does not necessarily mean that MCS never impacts the olfactory system. It simply means that MCS is not primarily an olfactory response.”

~ Martin L. Pall

Myth #5:  MCS is a rare disorder.

 Possibly up to 25% (depending on the study you read) of people in the US report symptoms of chemical sensitivity.  It’s likely that most of the statistics on MCS prevalence are shots in the dark, as many people who suffer with MCS go undiagnosed.  Many others who are sensitive to chemicals simply don’t know what it is that’s making them ill. – MCS statistics

Myth #6:  MCS is controversial. 

Dr. Ann McCampbell, in her article Multiple Chemical Sensitivities Under Siege, had this to say about it:

“Like the tobacco industry, the chemical industry often uses non-profit front groups with pleasant sounding names, neutral-appearing third party spokespeople, and science-for-hire studies to try to convince others of the safety of their products. This helps promote the appearance of scientific objectivity, hide the biased and bottom-line driven agenda of the chemical industry, and create the illusion of scientific “controversy” regarding MCS. But whether anti-MCS statements are made by doctors, researchers, reporters, pest control operators, private organizations, or government officials, make no mistake about it – the anti-MCS movement is driven by chemical manufacturers. This is the real story of MCS.”

The controversy surrounding MCS is not real.  It is manufactured by chemical industry leaders with a profit-driven agenda.

Myth #6:  “If I can’t smell it, it’s not there.”

If you put it on, ever, it’s there.  Often we cannot smell our own odor because of something called olfactory fatigue .

Myth #7:  The dose makes the poison.

Many people assume that “just a little won’t hurt”.  But check out what Philip and Alice Shabecoff had to say about it in their book, Poisoned for Profit: How Toxins are Making Our Children Chronically Ill:

“Chemicals capable of disrupting endocrine hormones… are now understood to be a different kind of toxin.  None of them follow “the dose makes the poison” dictum.  Even at tiny doses they can alter the way the immune and endocrine systems operate, leaving the body vulnerable to sickness or developmental damage.  Pthalates, bisphenal-A, dioxins, flame retardants, and some pesticides as well as long-banned chemicals persisting in the environment, such as DDT, are major hormone disruptors.”

Incidentally, pthalates are found in many fragrances, which also means that it’s found in many if not most fragranced products.

Myth #8:  MCS is just an excuse to “opt out of life”.

I have spoken to and read about many people who have MCS, and not one has ever seemed happy about their isolation.  In fact, what I hear most is despair approaching desperation.  Nobody wants to be shut out of life.

Myth #9:  People with MCS behave in contradictory ways.  Sometimes they say they react and sometimes they seem fine.  This must mean they are not telling the truth about their symptoms.

Symptoms of chemical sensitivity can wax and wane depending what level of health the sufferer is experiencing at the time.  When a person with MCS is feeling particularly strong, perhaps because of their efforts to heal their body, they may not have such obvious reaction to chemicals.  On the other hand, if the person is feeling run-down, it’s possible that their reactions will be more severe and long-lasting.  Things that affect sensitivity levels include stress, sleep, nutrition, and whether or not they have been able to breathe clean air in recent days.

Or…maybe they don’t want to tell you every time they start feeling ill because they are tired of be told that it’s all in their head?

Myth #10:  People with MCS just need to stop thinking about chemicals and symptoms and they will be fine.

It’s true that thoughts can be very powerful.  But as I mentioned before, most people with MCS didn’t even know that they were being made ill by chemicals at first.  Obviously, thinking about chemicals could not have played a role in the etiology of their illness if they didn’t even know to think about them in the first place.

Myth # 11:  “Normal” people shouldn’t have to worry about the products they use if there are “safe” areas set aside for those with sensitivities. 

It might seem like a good idea to provide an area set aside for people with chemical sensitivities at social events such as religious services, conferences, conventions, and concerts, but there are a couple of problems with it.  We all would like to participate fully on social occasions.  Segregation does not feel good.  It’s frustrating and disheartening.  Also segregating people with MCS away from others in a group tends to give people a false sense of having done the right thing.  They often feel that because those with sensitivities have their “safe” area, that it won’t matter how much fragrance they use or what the building is cleaned with.   It is very difficult to keep a small area of a building completely free of scent when the rest of the building is full of it. This is often due to common ventilation systems and the opening and closing of doors. It’s similar to the absurdity of setting aside non-smoking sections in restaurants.  The non-smoking section may be slightly less noxious (or not), but it will never be completely free of the presence of smoke or tobacco residues.

Myth # 12:  If my scents were making people ill, they would tell me.

People with MCS have often encountered so much skepticism and ridicule from family and friends about their symptoms that they may give up trying to talk about it.  We sometimes find ourselves having to choose between educating the public about the reality of MCS and keeping our friends.  Some of us suffer in silence. Others choose to try to quietly escape a toxic situation without making a scene.

Some cases of MCS are so severe that a reaction goes far beyond what might be considered typical.  It is possible for a reaction to cause so much brain fog that the sufferer finds it difficult to articulate thoughts and may not be able to tell you that you are making them sick.  Some reactions can include hearing loss, temporary blindness, and may even progress to the point where the sufferer actually physically collapses.  This is extremely frightening for the sufferer and for those standing by.  How would it feel to find out that it may have been your Chanel #5 that caused this to happen to someone?

Myths and Facts About Chemical Sensitivity

Myth # 13:  Everyone should not have to change just to help a small minority.

The American Academy of Environmental Medicine had this to say in their Position Paper on Chemical Sensitivity:

It is believed that these chemically vulnerable modern-day “canaries in a coal mine” have an important lesson to teach us, if we would but listen – namely, that the hyperreactivity manifested by those with chemical sensitivity is an early warning sign of the alarming potential for eventual poisoning of our entire population by the numerous man-made chemical pollutants to which we are being continuously exposed. In other words, the fact that chemically sensitive individuals demonstrate exquisite vulnerability to toxic injury should serve to alert us to the disturbing reality that our modern industrial society, despite its many advantages, may ultimately compromise the health of us all.

As noted earlier, MCS is not rare.  And many of the people who are suffering from it are unaware of what it is that is making them ill, so the actual number of sufferers is likely to be much higher than the numbers that are published.  Also, many of the chemicals to which people are reacting are known human toxicants, many of them carcinogens.  We would all do well to avoid them.

It can be much easier to change our cleaning, washing, and beauty routines than many people assume.  Check out EWG Consumer Guides for help in finding non-toxic products.

Myth # 14:  People with MCS seem to get sick from every little thing.  They are over-reacting and need to loosen up.

Toxic chemicals truly are ubiquitous in the modern world.  They are nearly impossible to escape.  People with MCS are not getting sick from “every little thing”, they are getting sick from human toxicants. Often, symptoms are so severe that they cannot simply “lighten up”.  They have to protect themselves from the consequences of toxic exposure. It sometimes happens that people with MCS will go on a trip to the ocean or mountains, breath fresh, clean air, and begin to feel almost 100% better.  What does that indicate about the nature of this disorder?  What does it indicate about our society that we should have to travel many miles away from population centers in order to experience normal health?

Conclusion

The truth is that MCS is a scary, cruel, and relentless thief of health, relationships, careers, and even lives.  Yes, people really have died from it.  It should be taken as seriously as any other chronic, possibly fatal illness.  But it’s not.  And most of that seems to have to do with the greed and political meddling of powerful corporations.  It’s the story of Big Tobacco all over again.  But this time it’s worse.  Imagine what it would have been like if tobacco companies had found a way to weasel their cancer causing ingredients into so many commonly used products that it was nearly impossible to avoid them without educating yourself.  That is what we have now with artificial fragrances and other toxic chemical ingredients.

Some people with MCS have been able to get better.  But many others, in spite of persistent efforts and lots of money spent on healthcare, still suffer and must strictly avoid chemicals.  But whether they are able to recover their health or not, most of them will never be the same.  It’s like going through the looking glass into a bizarre world where nothing is as it should be.  They will never forget what they have experienced, or the people in this world who are still suffering.  To those people, I dedicate this post.  And I pray for their recovery and for the world to awaken to this disaster.

Additional Reading:

 Amputated Lives: Coping with Chemical Sensitivity

Multiple Chemical Sensitivity, A Mysterious Malady, Awake magazine

When Chemicals Make You Sick

Helping Those With MCS

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life, Discover Magazine

Multiple Chemical Sensitivity: Toxicological and Sensitivity Mechanisms

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