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 reactions 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.

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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23 thoughts on “Canaries in the Coal Mine: Multiple Chemical Sensitivities, Myth Vs. Reality

  1. Excellent blog..well done! I think you have covered everything so well and I intend to share this. Thank you so much 🙂

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  5. Thank you, Thank you, THANK YOU so much, for writing this article and for saying what many of can’t. This was an Excellent Read!! I have been living (home bound) with MCS for the past 8 years, but only found out what MCS was, about 3 1/2 years ago. And boy howdy, were some major “blanks” filled in about my illness when I began researching MCS. I also have severe Allergies (which came back after 30 years, and appeared again the same exact time I began first noticing chemical reactions….). I truly appreciate this article and it really helps when you have to deal with constant criticism, etc. What you wrote, “makes sense.” Most folks don’t want to deal with “sense” ha ha, but you nailed it. I am also “Petite” and fully understand the medication problems and dosing problems associated. Seems like some medical professionals just don’t take that into account. Thank you again, for creating this informative, heart-touching, blog and for your wonderful writing. Best Wishes, and Gods Blessings on you and yours. 🙂
    Angela M.
    Memphis, TN

    • Thank you so much for your heartwarming comment. I’m sorry I haven’t responded until now. I’ve taken quite a long break from blogging and having checked back in awhile. I hope you are well!

  6. Thank you for the kind reply Gretchen! 🙂 Today, I am okay. As you know, living with MCS is day to day….I hope you are doing well and all is wonderful in your Life. ♥
    I ran across another article on here that involved a friend wearing perfume/scented clothing and do you tell her or not that her visit made you ill? That very thing happened to me just a couple of days ago!
    I have a dear friend that moved to Miami, FL, about 6 years ago. I haven’t seen her since. Due to the hurricane she had to evacuate Miami, and she came to Memphis to stay with another friend, and would stop by and see me also. I had asked her not to wear perfume, etc. She said okay. She showed up drenched/saturated in perfume/scented lotion, etc. It must have been in her hair as well as her clothing for it was the strongest I had ever smelled. I instantly thought to myself, “Do I let her into the house or not? Do I tell her why? Do I just try to bear it and see what happens?” All of these thoughts swirled through my mind in a mere matter of 20 seconds. I decided to test it, and allow her in the house and see what happens. I have basically been avoiding going anywhere for the past 5 years, except twice a month I will get out and with a mask, brave the perfume smells to go get my allergy shot. But that is the extent of my excursions out of the house.
    Somehow, I was able to tolerate (just a little coughing and slight wheezing….) sitting across the room from her for an hour visit. But then, she hugged me, and now the perfume smell was on my clothing and my hair. She left right after, and I had to take a shower and wash my hair to get the smell off of me. I immediately washed my clothing, hoping if I added some Vinegar to the wash, the smell would come out and I would not have to throw the outfit away. I became very ill that evening, and was sick the next day. 😦 I experienced dry mouth and throat, itchy eyes and nose, to the point of my nose began to bleed. I was wheezing, and just scratchy throat so could only have soup and ice cream during that time.
    Since it was raining the next day, I was able to open the windows to try to “air out” the toxic, but pretty smell, and I did my best to scrub the sofa where she sat, with vinegar and water and even sprinkled with Baking soda. It has been two days and I can STILL smell it on the couch. I will have to refrain from going into my living room and sitting on the sofa I guess until the smell goes away. That could take months….if it even goes away at all? I did not have to throw the clothing out, thank goodness!
    So, even after avoiding the world the past 5 years, that has not been enough apparently, to alleviate and keep me from getting sick after being exposed to perfume type chemicals. That is a bit depressing in itself.
    So do I tell her or not? Hmmmmmm….have been debating on that. She is not from America and is from Slovakia, but speaks pretty good English. I have known her for 15 years. I have family memembers that think they understand my situation, but they really don’t. I have a husband that has tried to go “chemical free” in the products he uses, but even he doesn’t “completely understand”, and it has caused so many problems in our marriage we will probably go our separate ways in the next few years. It is hard to expect or to ask someone to have to live they way you do. It isn’t a life I would wish on my worst enemy.
    I might not see my friend again for another 6 years, but then again, I could see her sooner…who knows? So I am thinking I will tell her. Not sure if she will understand though from what just happened. But I can’t blame her as she did have to flee from Miami and only had time to grab her cat and the clothing on her back. Not her fault.
    Gretchen, I can’t tell you enough how much I appreciate and am so happy to have found this site! You are a blessing. I plan on building my own “safe” home in the near future. I want to build a small Geodesic Dome Home and make it as low VOC and chemical free as possible. I have been doing research on building materials, etc., and furnishings for the home the past couple of years. TONS OF RESEARCH!! It has given me a headache on a few occasions, ha! But thank goodness there is more information on the web now and more sites devoted to MCS and CS and low VOC information is becoming more available. Still, there is testing involved as not everybody is sensitive to the same thing, and in the same dosage. But I will find a way. I have to. My life depends on it. I am sure I will have to off-gas my home for 9 months to a year before I can move in, but it will be worth it if it is a healthier environment in the long run. My worst fear is to spend my money and build a home that I will never be able to live in. That would be horrible!
    Life is all about sharing, learning, doing what is right for yourself, and helping others along the way. Helping others is the sweetest most rewarding thing you can do for your self and them. I feel you are helping others, and with that, Thank you again.
    Have a wonderful day, and God Bless! ♥ 🙂

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