I’m often asked to explain what MCS is, how it affects me, and what it means about my role as a service dog partner. This page is dedicated to answering those questions. Having MCS is like living on another planet, so it’s not surprising this “alien” life imposed on MCSers is so hard for non-chemically injured people to understand.
MCS stands for multiple chemical sensitivity. Some people also refer to it as environmental illness or TILT, toxicant-induced loss of tolerance.
Having MCS means that tiny exposures to chemicals found in every day products that most people don’t think twice about make me sick.
Let’s break this down.
How did you get MCS?
Most people with MCS can point to either one acute (large) chemical exposure or a series of chronic, smaller exposures that triggered the onset of their illness.
I first became chemically injured (though I didn’t know at the time that it was happening), by working in a “sick building” for three years. This caused mild MCS, but, not knowing what that was, I had no explanation for the strange symptoms that seemed to come and go. Over time, my symptoms got worse, and I was vaguely aware that I “didn’t like” to walk down the detergent aisle at the store or that I put my turtleneck over my nose when talking to a coworker who wore cologne. But, I didn’t connect these feelings to my symptoms, which started as pain, tingling, and numbness in my hands, then spread to generalized pain in my arms and torso, along with headaches, spells of dizziness and confusion, and fatigue that came and went.
In my case, the low-level, constant exposure to the sick building was the initial trigger. If I had recognized what was happening and taken steps to lower my toxic burden, I might have regained my health and not become disabled. Instead, I moved into an apartment with freshly painted walls, bought cheap pine furniture (which is usually imbued with fungicides, insecticides, and formaldehyde), and then painted the new furniture. My symptoms increased in severity and number, and still I didn’t see the connection. Being so ill, I was forced to stay home from work and from teaching; I didn’t know this was the nail in the coffin of my health. The ancient gas stove and furnace in my kitchen and living room were leaking. As a result, I suffered several months of low-level, chronic carbon dioxide poisoning. By the time I found a doctor who diagnosed me with MCS and told me to shut off my gas, I’d developed severe MCS and CFIDS/ME.
What are these every day products?
Fragrance chemicals are a biggie. Pretty much, if it has fragrance in it, it’s going to make me really sick. This is true for virtually all people with MCS. Fragrance products include perfume, cologne, aftershave, essential oils (even “natural” ones), deodorant, laundry detergent, fabric softener, cleaning products, soap, shampoo, conditioner, moisturizer, cosmetics, and on and on.
Another very serious problem is any sort of pesticide, including herbicide, insecticide, fungicide, rodenticide, anti-bacterial gels added to seemingly benign products (like mops or sponges), and commercial flea/tick products (Frontline, Advantix, etc.). These products are life threateningly dangerous to me, whether they are used in pellets or sprayed on a lawn, dusted on crops, or “spot treated” with RAID. In fact, a brief, outdoor exposure to RAID ant-spray in 1998 caused me permanent neurological damage, and a neighbor’s use of Weed n’ Feed (which he didn’t realize would be a problem, because it was in pellet form) made me seriously ill (vomiting, migraines, in bed, etc.), for three weeks — with all my windows and doors shut. Because of drift, pesticides used even miles away can still make a person with MCS sick, depending on landscape, winds, which chemicals were used, and how they were applied.
Other problematic products include cleansers, building/construction materials, automobile exhaust, smoke (cigarette, wood stoves, bonfires, etc.), new carpeting or furniture, paint/turpentine, floor wax or polyurethane, new plastic or new electrical components (such as the stuff computers and appliances are made of), magazines/newsprint/books, and on and on.
What is an “exposure”?
It varies with the situation, but basically any time I come into contact with a toxin, it’s an exposure. This is usually via inhalation through my nose or mouth (breathing chemicals in the air), but it can also occur through skin contact, contact with the mucous membranes (especially the eyes), or ingestion (eating or drinking something that makes me sick). An exposure can occur in a fraction of a second — the instant I get a whiff of my neighbor’s fabric softener fumes — or over a period of hours (the whole time I’m at the hospital, where they use chemical cleaners and disinfectants and wash their linens with bleach), or over weeks or months (when my oil delivery person spilled a couple of drops of oil from my tank, and I became sensitized to oil and couldn’t use my heat that winter, but the fumes still came up from the basement). On the other hand, if I take a new, hard-plastic item out of its packaging and find that it is still outgassing, it’s sometimes enough for me to just put it somewhere I won’t breathe it (a designated outgassing area of my house) and wash my hands. In this case — of a very short, very mild exposure, without inhalation — I usually only experience symptoms during the exposure, but afterward, I feel okay.
A typical exposure for me is being in the same air space (car, house, building, even outdoors if we are not at a sufficient distance) as a person wearing fragrance. By “wearing fragrance,” I mean someone who is not 100-percent fragrance- and toxin-free full-time. This means that being around anyone who uses scented/commercial shampoos, soap, deodorant, laundry detergent, or any other scented product on their skin, hair, or clothing, or who has been in an environment with other people who do and picked up those residues on their hair, skin, or clothing, makes me sick.
How sick is “sick”?
The severity of my reaction depends on the dose, toxicity, and duration of the exposure. In the example above, fragrance exposure, which is my most common problem, usually my symptoms are as follows: First, my face turns bright red and hot, like I have a rash. Then I get asthma and start to cough. If the exposure continues, my symptoms generally include nausea, dizziness, headache, sore throat, elevated blood pressure, exhaustion, confusion, and muscle weakness. Delayed symptoms can last for days, weeks, or months after the exposure and can include apraxia (inability to speak), fevers, muscle weakness/paralysis, low blood pressure, and cognitive and neuropsychological symptoms.
On the other hand, an exposure to any pesticide, even for a moment, will cause a severe reaction (projectile vomiting, migraine headaches, incapacitation, erratic blood pressure, etc.) that will last. A bad enough pesticide exposure would kill me. I have friends who have died from neighbors using pesticide.
How can these products be poisonous? They’re just normal stuff people use.
It’s true that almost everyone (in the US) uses these things, and that’s the main reason why living with MCS is so difficult. Finding accessible housing (housing without the types of heating, construction materials, furnishings, etc., that make us sick, for starters) is a huge challenge. The homelessness rate among people with MCS is astronomical (most of us are homeless at some point). It’s also what makes us so isolated, as those of us who are severely affected are essentially prisoners in our homes. And even in our homes, we must be very careful. Nobody is allowed inside my home unless they either are totally fragrance- and toxin-free, or they live a fragrance-free lifestyle but have been somewhere “smelly,” in which case they shower and change into guest clothes that I provide.
What do you mean by “chemical”? Isn’t everything made of chemicals?
Yes, everything on the planet is made of “chemicals” in the strictest sense. Water is made of oxygen and hydrogen, which we need to survive. Baking soda (sodium bicarbonate) is made up of sodium, hydrogen, carbon, and oxygen. Like water and air, it is one of the most benign, inert chemical compounds there is.
However, when most people, and especially those with MCS, refer to “chemicals” in products or the environment, we are usually referring to synthetic or “man-made” chemicals — compounds of chemicals not found in nature, or even some naturally occurring chemicals that are toxic. (Radon, mercury, and arsenic are some examples of naturally occurring chemicals that most folks would rather avoid!)
The chemicals found in personal care products, new carpet, exhaust, industrial cleaners, and pesticides are toxic. For example, perfume is composed of alcohol and petrochemicals. Perfumes are a stew of toxic chemicals. Fragrance products typically contain carcinogens, nervous-system disrupters, skin sensitizers, respiratory irritants, and other dangerous ingredients. Some examples of these commonly found chemicals in soap, shampoo, perfume, nail polish, etc., are acetone, benzel aldehyde (a form of formaldehyde), camphor, ethyl acetate, and methylene chloride. These are not the Latin names for pretty flowers!
Maybe you have heard the term, “The dose makes the poison”? For most (healthy adult) people, exposure to most of these chemicals will not be enough to make them sick. For those with MCS, a much, much smaller dose of a toxin causes the symptoms of poisoning that a healthy person would exhibit at a much higher dose. MCS is not an allergy. Allergies are immune-mediated, and antihistamines can usually reverse the allergic response. MCS is really a form of systemic poisoning, with multiple organs and systems affected. Reactions cannot be stopped with antihistamines or other treatments, and exposures can cause permanent organ damage or systemic damage. With these aspects of this disease at play, the only universally agreed-upon treatment for MCS is avoidance of chemical triggers.
If these products are so dangerous, how come most people can use them and not get sick? Why doesn’t everyone have MCS?
There are several possible explanations. One is that some people, due to genetics and environmental factors, are more likely to develop MCS than others when they experience a triggering event. It seems likely this was a factor for me, as I already had asthma, and everyone in my family but me — until I got sick — had allergies as well as asthma, and sometimes other health issues. Looking back, I also always had an extremely strong sense of smell and was made sick by certain smells; I just didn’t know there was a name for it. (For example, being in a car made me sick, but my family thought it was car [motion] sickness, even though it started as soon as I sat in the car, whether it was moving or not. I also could not tolerate most metals in jewelry and had chronic infections due to cheap earrings.)
When a triggering event occurs, such as a chemical spill at work, some of the people might suffer acute symptoms but have no long-term effects, others might get sick and develop MCS, and still others might initially appear to recover but later get sick with a variety of health conditions that may or may not be traced back to the poisoning. An example of a major triggering event that caused a variety of forms of chemical injury is the World Trade Center Attacks.
Some other factors that often indicate who is at greater risk for developing MCS are those exposed with greater frequency and severity to toxins, people with developing organs and body systems (fetuses, infants, and children), those who have compromised or weakened health (the elderly and people with existing neurological or immune illness), and women, especially in their child-bearing years.
It is also often the case that some people are experiencing damage to their health by using chemicals, but they are not aware of it because the damage is accumulating without showing recognizable symptoms. This is how cancer, another form of chemical injury, usually develops; i.e., if someone is exposed to enough radiation, it can kill them immediately, but more often people are exposed to radiation that takes years, sometimes decades, for the cancer to develop. There is mounting evidence that ongoing exposures to chemicals are implicated in Parkinson’s Disease and numerous other conditions such as autism, asthma and allergies, to name just a few.
I often use the example of smoking for showing how different people’s bodies react to the same poisons. Everyone knows that cigarettes cause a range of health problems, yet not everyone who smokes gets sick. Imagine a group of ten people who have all smoked about the same amount for the same length of time. Some of these people might get lung cancer, some might get emphysema, some might develop more frequent upper respiratory infections, some might develop asthma, and some — like my grandmother — might live to be 85 and die in their sleep, with no apparent ill-effects from a lifetime of cigarette smoking.
I know someone who says they have MCS but they can/can’t do something you can‘t/can and do/don’t react to something you don’t/do.
It’s very important to realize that everyone with MCS has different symptoms and reacts to different things. While there are some chemical triggers that are problems for everyone with MCS (perfume and pesticides, for example), there are other products or compounds that some can tolerate and others can’t (wood stoves, essential oils, and coffee aroma all make me sick, whereas some with MCS can tolerate these things). MCS also occurs on a spectrum of mild to severe (like almost all diseases), so the severity of symptoms or number of triggers varies, as well. Further, MCS is not a static illness; if an MCSer is able to avoid exposures, they may improve over time and have reduced symptoms or severity, whereas if they are continually exposed or if they have a catastrophic exposure, they generally get much worse and are more sensitized. For example, my chemical sensitivities have improved over the last several years. Exposures that would have incapacitated me for months several years ago now only affect me a few days.
How does MCS affect your dog-related work and life?
Being a service-dog partner with MCS is challenging. For one thing, one of the most dangerous classes of chemicals, pesticides, is one that is used routinely on and around dogs, and is therefore ubiquitous at every dog event and veterinary hospital, and on the person and possessions of most dog owners. This makes it hard for me to socialize my dogs to other dogs without worrying that they will bring pesticide home on their coats. It also means I cannot go into veterinary buildings or to any other dog event, unless some day there’s an event held by dog owners with MCS. (Wouldn’t that be wonderful!)
Because even people who don’t have dogs usually have fragrance or other chemicals on their hands or bodies, it also makes it harder to socialize my dogs to other people, without the dog becoming coated in chemical residues that will make me sick. The same thing is true of where we go. To properly socialize a service dog, I need to take him to every possible environment I might ever go to. Thus, I must carefully choose such trips, attempting to go to the least toxic environment of its kind, and space the trips apart, to give myself an adequate number of rest days between them. I also use oxygen, a mask, and an air filter when in an environment that is not MCS-accessible, so I have to teach the dog to get used to these pieces of equipment before we train in environments where they are necessary.
If I leave the house, unless it’s just to go into my yard or another outdoor, safe environment, I must shower and change my clothes upon returning. When I have a dog working or in training with me, they get bathed upon returning home as well. I have very clean dogs! (I make my own “dog shampoo” by combining a gentle MCS-safe shampoo for humans with a large amount of a nontoxic conditioner. I find that the conditioner prevents skin and coat problems that otherwise accompany frequent bathings.)
I love dogs, therefore it’s hard to be around other peoples’ dogs and not be able to pet them. Occasionally I find someone who doesn’t use pesticide on their dog, and then it’s a real treat to be able to pat them — the dog, not the person. (Normally I just talk to or give treats to dogs because I can’t risk touching them.) However, due to my allergy to “normal” dogs (dogs that shed), I still have to keep this to a minimum. The people who know me warn me if they have recently applied Frontline or Advantage to their dogs, in which case I don’t even go near them (or allow my dog near them).
Nonetheless, my disabilities have not prevented me from making friends with other dog people in my area, and from providing — or swapping — information, support, and resources with other pet dog owners or assistance dog partners, via telephone, email, or listserv.
Do your dogs provide any MCS-related assistance?
So far, this is limited, though I’m hoping to expand in this area. Although I know it sounds silly, licking envelopes and stamps is a big help, which I trained both Jersey and Gadget to do. (The command is, “Lick!”) Sometimes I’ve had a dog pick up, hold, and/or carry something that I didn’t want to touch (and then had them drop it in the trash or recycling) because it would be an exposure for me to handle it.
I do know people who have trained their dogs to alert them to, or guide them away from, chemical exposures, as well as people whose dogs just naturally started doing that on their own. I haven’t yet had a dog who had this tendency on their own, and I never really wanted an alert for anything except pesticide. Due to my exceptional sense of smell, I am well aware of the exposures I’m having almost all the time, and can usually tell not only what type of product, but often what brand, is making me sick. The people who have ADs who alert them to exposures usually have a limited number of sensitivities (such as to aerosol and paint) or allergies (such as to peanuts), or have lost their sense of smell due to chemical injury, so it’s much more practical in their case; if I trained my dog to alert me to everything that made me sick, we couldn’t go anywhere without him alerting every other step!
The only smell I can’t pick out of the blue is the one which has the possibility of doing me the most harm — pesticide. However, in order to train the dog to alert me to it, I would have to be around the pesticide to do the training, which is impossible. I know exactly how I’d want to train a dog to alert me to pesticides (I came up with a lesson plan based on my previous experience training scent work and from my reading and related training experience), but when I tried to find other people who would be willing to train this skill, they were not interested. I also have concerns about exposing my dogs to pesticide for the training, because of the impact it would have on their health.
Given this, my strategy for Barnum — my current puppy and future service-dog-in-training — is to try to train him alert me to physiological changes before I notice them, such as oncoming migraines or psychological symptoms. I’m hoping that by training a high degree of sensitivity and responsiveness to my body’s changes of one sort, I can generalize that skill to other areas, including immediate exposure reactions that I might not be aware are occurring. I would start by first making a connection between exaggerated displays of symptoms that I’m aware of and a reward and alert behavior, and over time, fade the cue.
How does MCS affect your ability to write?
The biggest problem it poses is that I cannot convene with other writers, and I cannot read print books. In other words, in order to attend a writing group, class, workshop, or conference, either everyone would have to have MCS or be totally fragrance free and hold the event in a nearby MCS-safe space, or it would have to be online, over the phone, etc. I did have a writer’s group that met at my home that consisted of other people who went fragrance-free to accommodate me, and some of them are still friends and colleagues over a dozen years later. I also try to network online as much as I’m able with other writers. Before Lyme, when I wasn’t as sick, I taught some online writing classes. I’d like to do that again someday.
My inability to read most new books because of fumes from ink, paper, and glue in the binding, or old books, because the paper has absorbed fragrance or smoke or has grown moldy, is a great limitation. Good writers need to be voracious readers. I do most of my reading by listening to books on tape provided by the Library of Congress’s talking book program for people with print disabilities. This is a fantastic service for which I’m tremendously grateful. More commercial audiobooks are also now being made available, which I really like, because that adds to the variety.
My other disabilities, especially my cognitive/neurological damage and my severe exhaustion, hinder me in both reading and writing to a greater extent than the MCS itself. Often people cannot see the brain injury aspect in my writing, but that is because they are usually seeing a final product that has been edited many times overs, usually with help from at least one other person. A reader can’t tell how many hours go into a piece of writing, or know what it has cost the writer in terms of symptoms or other “activities” (including rest) that have been sacrificed, to check and recheck every word.
Comments or questions are welcome. However, comments suggesting or detailing personal treatments, cures, etc., will be deleted. There are many other listservs, websites, forums, etc., on the internet devoted to discussing these topics.
*Note: I’ve removed the comment feature from most of my informational/”about” pages, including this one. However, many people seemed to find this reply I wrote in response to one of the comments helpful, so I’m pasting it below.
Thanks for your comments. You are kind as always.
I don’t really think of myself as being brave and strong. Everyone — with or without disabilities — just does what we need to to live our lives. What other choice is there? People learn to adapt, or they die. I don’t wanna die, soooo. (grin)
I am very glad you posted, actually, because it sounds like you have mild (or perhaps moderate) MCS. In fact, studies show that 30 percent of the population has sensitivity to one or more chemicals (such as cigarette smoke, perfume, or painting supplies). This is not MCS, it is chemical sensitivity — not the full-blow syndrome — but CS can easily turn into MCS. I say this not to scare you, but to give you hope and empower your to change your life to reduce the chances that you develop MCS.
If you take steps now to limit your exposures, that will make two very important changes in your life. 1. You will experience symptomatic relief. The reactions you have now (such as migraines) are very typical for chemical sensitivity reactions, and the products that trigger them are very common triggers (soap, detergent, hairspray, perfume, etc.). In fact, when you mentioned your sinus surgeries, that sent up a red flag for me because often serious sinus problems — including polyps that need to be removed surgically — are a symptom of MCS. Which brings me to my second reason.
2. If you lower your toxic load, you will reduce the likelihood that you will develop full-blown MCS, and in fact, you might, over time, experience reduced sensitivities/symptoms.
In other words, MCS is a progressive disease. The more chemicals you are exposed to, once sensitized to one, the more you become reactive to. In most cases, the only way to stop this spreading effect is to eliminate as many exposures as possible.
This is the information I wish I’d had when I was starting to get sick, and didn’t know the cause. You are in a position to prevent ending up a “universal reactor,” which is what I used to be several years ago, when my MCS was at its worst. (I am now just considered “very severe/disabled” on the MCS scale. At this stage, I’d say you’re probably in the mild to mild-to-moderate range.)
There are many sources of nontoxic, fragrance-free soap, shampoo, dish liquid, laundry detergent, moisturizer, and on and on. You can find product and resource lists at many of the sites that I linked to in the two pages I mention above.
One good place to start is NEEDS. They sell a huge range of products at pretty good prices. Not all of them are MCS safe, though, so it’s important to call and speak to customer service and ask which of the products are considered “MCS safer.” What works for one with chemical sensitivities might bother another, so always get the smallest amount possible of any new item to test for tolerance. If you do well, you can save money next time and buy in bulk. A company run by and for people with MCS is Magick Botanicals.
You can also find nontoxic, fragrance-free personal care, laundry, and cleaning products at most major stores now. Certainly health food stores, such as coops or Whole Foods, carry them, usually a large array. But even chains like Stop n’ Shop now carry some less-toxic, fragrance-free products. The key is to search for terms like “100% fragrance-free, nontoxic, hypoallergenic” on the label. “Terms like “natural” or “healthy” don’t mean anything; they are unregulated terms, and a product that says “unscented” may actually have fragrance chemicals in it, and then additional masking chemicals to cover over the fragrance, which is the worst! If you can go to a natural food store and say you are looking for products for someone who is “chemically sensitive and allergic to fragrance” and ask if they have something that fits the bill, that’s often the best bet.
Good luck, and good health!
-Sharon and the muse of Gadget (who was actually sensitive to certain medications and “dog products” himself)