Guest Post by Leah Spitzer
I have Multiple Chemical Sensitivity (MCS) – a “multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances. (Environmental Protection Agency).” In other words, I react to fragrances, building products and more. It is not a histamine reaction, but rather, a systemic reaction to the chemicals in fragrance and other products.
As someone with MCS, I’m also known as a “canary” with deference to the Canaries in the Coal Mine. As a canary, I often encounter looks of disbelief when I mention I can smell someone’s laundry detergent, or fragrance. I can smell it on them, their dog, their cat, their clothes, or even the package they are bringing me. I smell it in their home and in their car.
Often times, if it’s just a passing moment, I try to step back, or just tough it out, but sometimes I have to speak out. When I do, the most common response, after the surprised look, are:
“I didn’t put any perfume on this morning”
or
“I don’t smell anything”
Why the disparity in perception? There are several reasons that I have observed:
Canaries have been sensitized to fragrance of any kind
Our sense of smell is heightened out of necessity. It’s the fragrance that warns us of the chemicals in the air. Our well being, and, for many, our very survival, depends on us identifying smells and chemical toxins quickly so that we can remove ourselves from the situation, hopefully before symptoms set in.
Most people are DE-sensitized to fragrance
When you first put on that dab of perfume in the morning, you smell it. But as the day goes on, you don’t. It’s not because the fragrance faded, but rather, because your nose adjusted to it. The same applies to your laundry detergent, your hair product and even your deodorant! You may not think your “spring fresh” laundry detergent has a fragrance after days in your closet, but the manufacturers work very hard to add in chemical ingredients that keep it not only smelling “fresh” for months, but also to spread in the air and attach to other items (like your dog, your cat, or your car). It’s still there – your nose has just acclimated to it.
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The world we live in is a virtual smorgasbord of fragrance
At any given moment, we could be inhaling as many as 10-20 fragrances: shampoo, conditioner, hair product, deodorant, laundry detergent, perfume, and aftershave. And then there’s the environment itself: floor cleaners, carpet shampoo, candles, plug-ins, air freshener sprays, and more. It’s no wonder that most noses work hard to block out the overload. Ever turn on a flashlight during the day? You can’t see the beam with all that daylight. Now imagine that your home, or even your body, is “daylight” and that one more fragrance is the flashlight beam. You would never notice it. But sadly, for canaries, it’s another matter.
Canaries work hard to live in a basically inert environment
We work very hard to remove all fragrance, odors and chemical toxins from our environment, so even a small drop of fragrance will stand out for us.
It is precisely because we are not constantly bombarded with fragrance, that we are going to be more likely to smell that small drop of fragrance – just as though it were a flashlight at night.
And for us, that flashlight – that drop of fragrance- can bring on very serious side effects. So while you may not be able to notice the fragrance, please trust that we can. And when we ask you to step away, it’s not personal… it’s survival.
For more information about our symptoms, go to
http://www.mcs-america.org/mcssymptoms.pdf
Additional resources:
http://www.ncbi.nlm.nih.gov/books/NBK234807/
http://www.ciin.org
http://mcs-america.org/mcsfactsheet.pdf
http://www.mcs-america.org
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Leah Spitzer has been disabled with MCS for 10 years and retired from dog training after 30 wonderful years due to this isolating disability. Leah is an active member of her local MCS support group Atlanta HEAL, and the moderator for the Facebook Group MCS Support for Family and Friends.
Updated to provide the archived link for MCS America, but PDFs are no longer available:
http://web.archive.org/web/20160214194756/http://www.mcs-america.org/
Seriously "Sensitive" to Pollution 
I love the flashlight analogy. It is so true that the toxic chemicals stick around for a very long time. Clothes that I have detoxed for years and then ironed still released “fragrance” and caused me to react.
Some of the chemicals are designed to hold and release the other chemicals forever after they are absorbed into skin and textiles etc… Phthalates are one such group of chemicals. I discovered another but can’t find it. I think I thought I’d remember where it was, but no…
And now that the fragrance industry is finding ever more things to add their chemicals to, despite knowing there’s a growing population of people who are adversely affected, life is becoming unnecessarily more difficult for many more people.
That is a great concern. If we stopped today spewing out the tons of toxic chemicals that are being released and develop no new toxic chemicals — still all the toxics that have been released will be with us for generations. And of course, we haven’t stopped — the world keeps making more.
It will definitely take a while to detox what we’ve done.
Indoor environments will be difficult to clear out the residues (like meth labs – I’ve said that before, and I’ll say it again).
We need some chemists to work on safe ways to dissolve and neutralize the toxic stuff!
If they don’t they should certainly disclose on real estate sales if a house has had air fresheners and fabric softeners and pesticides etc used.
Add scented candles and 98% (guesstimate based on past experience) of incense to that list… If someone offered me a (multi) million dollar home, I wouldn’t be able to live in it if those products had been used.
Product manufacturers should not be allowed to manufacture products that don’t break down in a reasonable period of time, or don’t have SAFE neutralizers available (can’t wait for a DE-Febrezer, for example)
When I read the title of your article I laughed as I can’t tell you how many times I have heard that too ;)
I used to get a lot of “but I didn’t use any perfume today” from people who had competing “parfum” or “fragrance” in at least 6 other products they had used that day (soap, shampoo, deodorant, lotion, make-up, laundry, …)
I actually lost my sense of smell as part of my MCS more than a decade ago. So it often happens that I realise there’s something in the air only when I start to feel sick. Pesticides do that to me (we live in a wine-growing area in the Western Cape, South Africa) and the worst at the moment is when my one neighbour uses highly fragranced fabric softener. We open our back door for our small dogs or to go hang our own laundry and the stuff comes into my house and sticks to everything. My domestic helper who comes during the week has a very keen sense of smell and warns me in time, but she’s not here over the weekend and my husband doesn’t smell anything. I eventually become aware of it more as a taste than a smell, but then I’m sick already. Different chemicals affect me differently: car exhaust and smoke residue in someone’s home puts me on a high; pesticides give me fatigue and fibromyalgia; the fabric softener makes me terribly nauseous and makes my colon bleed. MCS America mentions “bleeding syndromes”, I suppose it’s that. Fortunately the brain fog makes me care less!! (Not quite true, but let’s pretend that’s so, otherwise I suppose we would all be drowning ourselves in a bucket.) xx
It’s hard when we canaries lose our sense of smell, I can relate. I’m sorry you have to go through this too (and I really “get” what you mean about the brain fog!!!)
I don’t have as distinguishable, specific and varied symptoms as you do now, I think it has been too long and my body has been through too much. My sense of smell has also become distorted and I can’t tell one thing from another at times, or I just can’t smell things. As most of my symptoms are delayed, I sometimes don’t know what it was that hit me now. I used to get more immediate symptoms from things I could easily distinguish. That was easier to deal with… and often if there were unknown exposures, I’d discover the source a few days later, from somewhere else in the neighbourhood, so I couldn’t smell the pesticides or pool paint, but the toxic molecules that blew my way at home were enough to affect me anyway.
They now measure pollution from across oceans, so that really validates how far away harmful pollutants can travel!
I think my dental infections may have something to do with my sense of smell now, as well as it being some kind of allergic response. I remember when the rhinitis? and loss of smell started and thought it had to do with the fabric softener some workers in the basement were wearing, as well as a couple of other exposures at the same time. I just never thought it would last so many years :/
Wouldn’t it be nice if we could all breathe clean air without so many toxic molecules in it?
I can relate to the delayed reactions. Frustrating to then have to wait them out. Re the pollution: my cousin is a mountain climber and they could see the pollution lying below them from the top of Mount Kenia in the middle of Africa. I wonder whether the only mutants eventually left on earth will have very thick skins with mere slits for eyes, mouths and noses, like the armoured trucks currently moving money around between banks? Hope your dental problems will improve. x
Thank you.
Glad to see you have a sense of humour left…
We really need one to survive MCS/ES and to see how so many in the world have been manipulated into poisoning themselves and their families, it’s so sad to see.
Hello from Canada! I had to write to you,you said you have a sensitivity to exhaust. I do too. I could not figure out why I was getting headaches in cars. I believe it is exhaust coming back into the car. My headaches are very different than normal headaches. Half my head hurts,feels strange in my sinus passage,like a swelling. Sometimes it will feel like a burning,or tinglIng, it hurts and it causes me to feel stoned, brain fog. BUT no one else in the car feels it,or smells it. The last time it happened I took it to a muffler shop n they fixed it. BUT previously we scrapped two cars because of this. I even caught my husband looking at me like I was crazy, when this 1st started. Now he calls me ,a canary, I consider this a gift sometimes. I can tell when a car has a “problem”. Exhaust,gas,oil,Glue. All give me this terrible headache. Friend me,I would like to talk to someone who may have the same health issue.
Alanna
Hi Alanna, sorry for getting back to you only now. I work from home plus get most accounts etc on my pc and my inbox simply fills up so fast I never get to the end of it. Please Like any of my pages, namely Allergy Asthma Eczema & Chemical Sensitivity in South Africa OR Chemical Sensitivity in South Africa, then we can make contact there. I do not have such severe MCS as many people on other sites, I can still work and go out to the mall etc, but the illness is virtually unknown in SA, so I started these pages to spread awareness and hopefully make contact with other sufferes in my country. I do not think there is no-one else in SA who is chemically sensitive, it’s just that they do not realise it and assume they have allergies or whatever. I react to chemical exposures with pain and fatigue, so joined a support group for fibromyalgia and then found other chemically sensitives there, not among the allergy sufferers, although my posts about the effect of chemicals on allergies also seem to be popular and get sent on. I have both allergies and MCS, so I initially assumed people with MCS always have allergies too, but apparently not. I post mostly applicable research on my pages, but also much personal experience, so hope to make contact with you there.
Very good article. When people say they didn’t put any perfume on that day they don’t realize that the chemicals have absorbed into their skin and are still being released into the air even after washing. Three years ago my granddaughter got a hold of a sample vile of perfume from her mothers purse and spilled it on both hands and her arm. We washed her off right away and changed her clothes. When her skin dried it smelled just as strong. We washed her hands and arms several times with soap and water then vinegar then baking soda then witch hazel then baking soda again, vinegar, baking soda. And each time her skin dried she smelled just as strong. It took 4 days of 2 baths a day before you couldn’t smell her as soon as she walked into a room and an additional 3 days before she could sit next to me without giving me a headache.
You made a great “Freudian Slip” there Lisa when you wrote “vile” instead of “vial” :D I’m glad she finally came clean!
Some of the chemicals are designed to help fragrances absorb deeper! And some are just solvents, that dissolve protective layers from the skin.
It’s terrible that they don’t sell antidotes and neutralizers to their poisons so we could get them off skin, clothing, and anything else that has become contaminated with them.
I got a blast of pesticide being sprayed onto roses in my face and eyes and onto my forearms through an open door years ago, which I think was the trigger that sent me into full-blown MCS some time later. The sensation was a brief but acute surface pain in the affected areas, which I immediately washed, of course. (I had a bad eye infection for the first time in my life a month of so later and had a very bad allergic reaction to the ointment I was given, have never been able to use any medication or drops in my eyes since then and an ophthalmologist later told me I couldn’t have laser surgery as I had scars on my corneas.) Interesting thing, though, is that I sometimes get that same surface pain reaction from body lotion (I always use fragrance-free ones anyway) and I’ve wondered whether there isn’t a chemical they have in common with pesticides specifically for “carrying” the active ingredients into the layers of skin, as moisturisers are supposed to do and pesticides need to do to kill the insects. Scary thought.
What’s worse is this:
Your Fragrance Is Less Regulated Than Fragrance For Pesticides!
https://lindasepp.wordpress.com/2015/02/10/your-fragrance-is-less-regulated-than-fragrance-for-pesticides/
Not all toxins are scents. I react to all kinds of chemicals. I make my own soap and moisturizers etc using only all natural food grade ingredients when possible. When I was still nursing I had an elderly greek patient. She was in her 80s and she had soft smooth wrinkle free skin everywhere but her face and hands. Her secret was covering up and avoiding UV exposure and slathering on olive oil after bathing. The best moisturizer is plain old H2O the key is to put lotion on while skin is damp to seal it in.
Very true that there are other toxins not associated with scents or fragrances. Some very toxic fumes have no discernible odor at all.
Fragrances just seem to have something in them that triggers a growing and serious “sensitivity” to toxic chemicals, leaving a trail of injured people.
Regarding lotions, read the labels. Some have many questionable ingredients that penetrate right into our bloodstream. Many of us use organic oils instead of lotions, and are very happy with the results. We probably shouldn’t put anything on our skin that we wouldn’t want to swallow, as it all goes into our body, and we weren’t designed for 24/7 exposure or ingestion of synthetic, petroleum based substances.
That is my pet peeve statement. My husband understands the roll of my eyes when someone says that.
It’s great to have that kind of understanding and support. Does he ever chime in to explain things to the people who say that?
I’ve had that happen a couple of times in my life, (way back when I was still able to go out a bit), and know others who had non-canaries do the ‘splainin, and it’s been awesome!
My husband is very good. He does speak up. Sometimes people listen when a non-canary validates what the canary is saying.
How do we encourage the non-canaries to speak up more?
What are they afraid of?
One person asked me once if it was okay for them to tell others about my sensitivities. They didn’t want to share information that I didn’t want shared. I realized then that I needed to let people know that it was okay to tell the world about my sensitivities. Since then, it seems many people speak up for me.
It’s not true for everyone, but I think some people don’t speak up because they feel they are respecting our privacy.
Good point!
So true – I cant let people pet my dig any more as age smells of their perfume/aftershave. It’s hard when people come to doggie sit as even if they don’t wear fragrance , the house and the dog smells of their deodorant and washing powder . The washing powder has def got worse recently surely it can’t be allowed! Ever supermarket smells of washing powder now and all the food packaging that comes from it. Something must be done to ban it.
The link to more information of symptoms is not working. I’d like to learn more.
The MCS America site has unfortunately been experiencing problems recently.
I have a symptom page accessible from a tab at the top, as well as in this post:
https://lindasepp.wordpress.com/2013/05/25/mcses-symptoms-and-environmental-incitants/