Be sensitive to those with Environmental Sensitivities | Queen of Green | David Suzuki Foundation
Photo: Be sensitive to those with Environmental Sensitivities

There's being sensitive to the environment and then there are Environmental Sensitivities — a medical disability recognized by the Canadian Human Rights Commission.

You know I have an aversion to scents. But the worst effect I've ever had is a headache. For people with Environmental Sensitivities, scents can be painfully debilitating and isolating. The condition can strike at any age, in men and women, although women are most affected (70 to 80 per cent of sufferers are female).

Rohini Peris, president of the Environmental Health Association of Quebec, has been medically diagnosed with Environmental Sensitivities, triggered by pesticide poisoning 18 years ago. When exposed to perfumes (made with fragrance) she suffers painful symptoms that can be disabling. Rohini shared her knowledge about the condition with me in time for Environmental Sensitivities Month. May 12th is Environmental Sensitivities Day.

What are Environmental Sensitivities?

In Canada we use the umbrella term Environmental Sensitivities, which includes Multiple Chemical Sensitivity.

"Environmental sensitivities can occur when people become sensitive to substances or phenomena in their everyday environment at levels well below what would be considered to be acceptable to 'normal' people. Sensitivity reactions can be triggered by scented products, cleaning products, laundry detergents, paints, petrochemicals, cigarette smoke, pesticides, pets, plants, fuels, electromagnetic radiation, moulds and foods."

A report by the Canadian Human Rights Commission and their policy on Environmental Sensitivities says that suffering individuals are entitled to the protection of the Canadian Human Rights Act.

We can all take steps to live fragrance-free and embrace chemical avoidance policies in the workplace to prevent illnesses and reduce health risks.

Environmental Sensitivities triggers

Chronic low dose exposure or one large exposure to mould, or to pesticides and other chemicals found in common products like solvents, can trigger this medical condition. Once productive individuals may suddenly or gradually become unable to tolerate being in offices, schools, hospitals, and public places.

The disability can manifest in a multitude of symptoms, often neurological. To get well, individuals need a healthy place to live. That often means avoiding public areas such as shopping malls, movie theatres, restaurants, libraries, etc.

You can imagine how isolating this would be — many patients drop out of sight. So even though there are over a million Canadians with a medical diagnosis of Environmental Sensitivities, many of the rest of us don't know about it. Those stricken simply become invisible.

If you suffer from Environmental Sensitivities, what's one thing you'd like others to know?

Sincerely,
Lindsay Coulter, Queen of Green

May 9, 2011
http://www.davidsuzuki.org/blogs/queen-of-green/2011/05/be-sensitive-to-those-with-environmental-sensitivities/

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37 Comments

Feb 02, 2014
9:57 PM

Someone had made a public plea in our cities newspaper for people to be scent free due to the debilitating effects it can cause so many people. It is sad to see so many people responded with out right hostility! Have a heart people! This is a disability not a preference! Come on!

Dec 28, 2013
10:10 PM

Hi Lindsay, I got the rug pulled out from under me 9 years ago (pesticide poisoning). One of my disabilities is chemical hypersensitivity.

I guess the thing I’d like people to know is “Yes, ‘just a little bit WILL hurt us.’” I can’t count the times that I’ve held a fragrance free event, only to get TOMA (Toxed Off My Ass) by a guest, who later defended themselves with the statement, “but I only used a little!” Or I needed something to control the frizzies!” I’d like them to know that we wouldn’t ask them not to use ANY, unless it was absolutely necessary. People who have used “just a little” have caused me liver and kidney damage, lymphoma, heart attacks, and other severe, to life threatening reactions. The onset is rately immediate or dramatic, it manifests like a cresting wave, but the damages go on for weeks or months. Please, people, do what ever ‘crazy sounding’ thing a person with chemical sensitivity asks you to. Its humiliating to have to ask, so we wouldn’t ask unless it was absolutely necessary.

Nov 08, 2013
9:29 PM

I am not a liar. Just because you don’t smell/notice/have this problem doesn’t mean it doesn’t exist. I am not mental — I have a disability. Yes ‘just a little’ perfume is too much. No it isn’t worth it to go to the bar/club — you can, I’ve already explained that ‘even if the smell doesn’t last forever’ doesn’t mean it’s GONE. (Srsly did you pay attention in science class?) Yes it is horrific and terrifying and extremely isolating — I am glad for the people who take the time to understand because I am so. Tired. Of. Fighting. Just to live……

Nov 20, 2012
9:31 AM

The one thing I would like people to know is that I am not a "psycho" … any more than a kid with cerebral palsy is a "retard". The worst part of MCS for me is my husband's attitude and the never-ending terror campaign he and his daughter wage to "cure" me of my "problem" and stop me from "controlling" them — they do this by "accidentally" exposing me to toxins and when he travels he drenches his clothing and skin with perfumes which of course come home with him and destroy my safe environment long after. It is like living in a kind of Gaza strip, never knowing when the next bomb will fall, just knowing that it will.
How many people with a disability do you know who have spent thousands of dollars to make OTHERS comfortable and not "inconvenienced" by their disability? I have done this for my husband and family members. Nobody would expect this of a person in a wheelchair or with severe nut allergies! The really crazy thing about this is that 1 in 6 Canadians suffer from some form of MCS — are we all "psycho"??

Oct 16, 2012
5:36 PM

At work, I work packaging our products and boxing them with TufFlex Metric Reinforced Natural K1277 tape.. On my very first day at work while I was taping all these boxes. I suddenly I noticed a numbing tingling feeling everytime I touchwed TuFFlex tape ( via tape machine ) At first I thought it was due to the fact that it was hot and wet.
But now going on 3 months…Its seems to be getting worst..Now its effecting both of my hands/fingers. The tinglying and numbingness is only located on the ends/tips of each finger. Please if you know anything..please contact me so I can do something about it…Although Im working. I dont have insurance and I am just a temp at this company Im working at…I dont want to say anything until I truly know this is the main cause to my pain and numbingness. Fearing that I might loss my job.

Sincerely, Alan.

Jun 08, 2012
2:44 PM

I live in a Canadian city where I have a job, can afford and owned my own home, but NEIGHBOURS at EVERY house I owned purposely used chemicals in a harmful way , making me sick. In all cases, I had to move. again and again. city, government, regulating bodies did nothing, but focus the blame and responsibility to me. No respect in your own home, no peaceful enjoyment, thanks to the attitude of the people. "We checked with the neighbours, and nobody else gets a smell' The re is no smell. The neighbours are not chemically sensitive. Society has pushed me out, as a productive member of.

May 30, 2012
6:43 PM

I find it amazing that so many people now agree that smokers do not have the right to pollute the air with second hand smoke, yet they think it is their right to pollute the air with their perfumes, scented laundry soaps, air fresheners, deodorants etc etc etc. Even my own family thinks it is OK. I am just the crazy sister or aunt that complains a lot. My sensitivities are quite mild to what many suffer but they grow steadily worse. And they are to all kinds of things. Cleaners, perfume or fragrance, flowers and grass, tree nuts and many different foods, ink, etc etc

I also cringe when I see my nieces and nephews who receive information from me quite regularly put things like hair spray, nail polish and lipstick etc on their 2 year old boys and girls. They are poisoning their kids and setting them up for possible problems later on.

I agree with Kathi too who asked that those with dryer sheets, please stop. I add to that scented laundry soap (which is most laundry soap) used in hot water, or hot showers with the scented soaps with the window open. There used to be one house next door to me and the man living there was in his late 80's so no scents coming out of his house. He died, the land sold and there are now 12 new row houses there, each one using all kinds of scented items daily. Worst is in the warm months when windows are open but winter is still bad for the laundry stuff. I also add to that people who insist when they come to visit that they are not wearing perfume. They forget that the laundry sheets and soaps scented their clothes and the scented hair care products did not go away. Deodorants make me throw up.

I just want people to be aware that the air belongs to all of us, not just a few and that these sensitivities are real. We are not crazy.

May 28, 2012
7:02 AM

I have developed environmental sensitivities to the point where I can not hold a job. In my last job I wound up taking too many sick days and was in danger of losing my job. I went off on sick leave and was tested for everything under the sun that could be medically wrong with me. I am now on a waiting list to go to the Environmental Sensitivities specialst in Toronto but the waiting list is so long I don't think I will be seen until next spring.
I find it is quite a struggle emotionally to be one of the ones that "becomes invisible". This condition is so overwhelming in all areas of your physical and mental health and yet you look healthy to those around you. Some people I meet surprise me with their knowledge of the subject but most try helpful suggestions like, "you will feel better if you get out and exersise", or "are you sure it is not menopause?"
Even thought my partner has first hand knowledge of how things affect me sometimes I feel even he does not really grasp the concept of what is going on. The coming year looks a little grim while I wait to see a doctor, I am more or less on my own to try to figure out how to manage my life. I hope that in future more resources will be created for people in this predicament. It is a long haul trying to find help.

Mar 21, 2012
4:29 AM

Hi there. I nearly died 3 years ago from an anaphylaxis attack which was caused by an overload of salicylates. Today, I am extremely sensitive to smells. I can 'smell' cockroaches even if they hidden somewhere behind God-knows-where, I can smell the nitrates in preserved food, I can tell if the food that is being reheated is overnight food, I can tell if the oil that is being used is recycled oil…. I have become that sensitive. imagine what fragrances do to me!

I have had near anaphylaxis attacks from smells!

I would like to share my story with you:

http://therighttobealive.blogspot.com/2011/09/day-i-met-death.html

http://therighttobealive.blogspot.com/2011/09/understanding-people-with-idiopathic.html

Take care, Evelyn

Feb 09, 2012
11:59 AM

I have always been sensitive. Even as a child I remember being sensitive in many ways Now as a woman who that is a mother with small children it has become even more difficult. After the death of my childrens father I have full responsibility financially, caretaking and entertaining. I have had to isolate us in many ways because it has just become so unbearable and frustrating. My social life has become nil. My work life is little as well. Do not wish to file for disability, but unsure how to sustain us otherwise at this point. I am living in a small little town, car free. As a wellness practitioner I am focused on healing. At the same time though we are being bombarded with more toxicity. I have had to eliminate many foods due to immediate symptoms. People may not realize exactly what is happening when the body kicks in to a response. They may think we are simply 'anxious' or 'overreacting.' That is not the case however. The reactions can be so sudden and so intense that it is beyond words what is felt in the body, mind, emotions.

I also have a butterfly shaped rash on my face which never goes away and becomes excruciating red with any toxic triggers. There is also a brain and inflammatory response in the eyes causing me to have issues with seeing-thinking clearly upon immediate contact. Thank you David for bringing this out to the public.

Nov 17, 2011
5:45 AM

I have had mcs for 30 years (all of my adult life). I appreciate reading this article so much, and all of the comments that follow. I recently got into a discussion in the letters-to-the-editors comments in the Halifax Chronicle Herald, where a healthy woman said that she didn't see why she should have to live a fragrance-free life just so that I, a completely stranger to her, could safely grocery shop and go to the bank, etc. I think it is important to get across to these people that if they don't care to stop using unnecessary chemicals to help those of us with MCS (one million in Canada, as David says) perhaps they could do it to help themselves and their families (those chemicals don't help anyone!) and also consider what they are washing down drains to effect the environment and their own drinking water!

I'd also like to say that fabric softener is a HUGE problem! If you are spewing fabric softener (even unscented) into the air in your neighbourhood from your dryer exhaust vent, PLEASE STOP! It is one thing for people to use air fresheners and other toxic chemicals inside their own homes, but shooting them out into the neighbourhood where they make passers-by sick, and even enter other houses through cracks and open windows shouldn't be allowed.

I am so happy to see articles like this, I think it is so important for the general public to know more about mcs. One of the problems we face is that mcs is such an isolating illness, and many of us don't have the energy required to get the word out! These chemicals are dangerous, not just to us who already have mcs, but to the rest of you who could so easily end up with this life-destroying illness … Or other health problems that are caused by chemicals … (Many of these chemicals are listed as "cancer causing" …)

Sep 06, 2011
5:54 PM

I have been living with this debilitating disease for over 10 years,and I have been ridiculed, screamed at, told there was nothing wrong with me, I had an attitude problem, went through many years of counselling, anti-depressants, put on many medicines that had adverse effects: all that care from the medical community.What a joke….all that while you are struggling with just trying to survive one more day of feeling so sick. Everywhere you go they have air freshener and the smell of toxic cleaners, carpets,and people smell like perfume, fabric softener and perfumed soaps,hairspray, gels and the list goes on and on. Those toxic fumes are in hospitals and it pisses me off, cause it make me so sick and I have no choice because I need medical care. Life at home is very lonely and depressing,I had to learn to go with the flow of this disease, because lots of days are spent lying down, other days I'm extremely depressed even suicidal, some days I can barely talk or think or do anything at all. Some days it takes me every thing I have just to be…period.I spent months having to live with excruciating joint pains and swelling.I have lots of sleepless nights which are followed by days trying to keep awake. I have months where I'm exhausted all the time, feel dizzy, nauseated, loose my balance, my nose is blocked or is runny, have pressure in my nose, eyes, head,being constipated or diarrhea, problems breathing, feeling burning in my nose, ears, and eyes,getting rashes , the list goes on and on. I do get some days when I feel almost human but that doesn't last long enough for me to even think about leading a normal life like going out in public or getting a job or even to have a friend. Nobody understands what its like unless they've lived it.It certainly is a lonely life and the support and understanding is very much needed.

Aug 03, 2011
3:23 PM

I have lived with MCS for about 40 years. I moved to the state of Georgia in the U. S for 2 years and since I came back to Canada my family doctor had retired. Now I have been trying to find a new doctor in the same clinic to help….but because my body reacts to the chemical odors in the clinic ( and of course it’s not just the clinic…it’s everywhere) and I have breathing problems and motor skill problems not one doctor will take me as a patient. I have been told ” GO SOMEWHERE ELSE” the DOCTORS HERE WON’T HELP YOU!!! How nice …to be So ignored… I have tried a smaller clinic but of course that is worse. Looking for a doctor to help me..

May 22, 2011
10:22 PM

What I would like most to do here is to ADD to the already cited descriptions. First, thank you David for listening with an open ear and with an open heart. Clarity is what happens when one is scientific in approach and does not hold on to ulterior motives. Next, G-d bless the people on this blog who have articulated beautifully some of the toughest challenges, needs, and cruel ‘trials and tribulations ’ experienced by those living (coping) with this extremely distressing physical condition. Not discussed however, is the misunderstood secondarily experienced psychological impact associated with MCS. Allow me to pose this question to those who ‘don’t get MCS’ . Would you label a cancer patient depressed because of the distressing effects of chemotherapy (to be) a ‘mental patient ? Would you then recommend on that basis, that the patient require ONLY psychiatric treatment instead of the chemotherapy ? Truly, this is what is at the heart of the problem when addressing the fundamentals of MCS .

Earlier in this blog, Linda K aptly related how she felt more challenged living with MCS than she did living with chronic leukemia. To help people understand just how devastatingly painful, limiting, and punitive this disease is, consider the following. Do you know anyone who has been treated with chemotherapy at some point in their life? Have they ever told you that they didn’t know if they would survive the chemotherapy treatments because the ‘chemo ’ was so effectively harsh on the cancer cells that it almost killed off the healthy cells too ? Chemotherapy is literally toxic. It is brutal on the body and on the mind. I too will tell you the truth… that living with, or more accurately expressed, struggling with MCS, is like waking up almost every day, for years, with no benefit to enduring the pain and suffering from the effects of chemotherapy!

Let’s not overlook the fact that when one is diagnosed with cancer and receives ‘chemo’,others rally to the patient’s aid. They bring flowers and gifts. They cook and bring food and treats. Medical personnel are sympathetic and patient with them because they have compassion. Family and friends put their lives on hold and support them by providing whatever is needed for as long as it is needed to the point of personal sacrifice. Now consider this. When one has MCS, the body is similarly overwhelmed with toxins. They include both exotoxins (those derived from outside of the body) internalized from the environment by way of inhaled pollutants- second hand smoke, and burned industrial wastes. Also, consumed toxic laden foods such as fish flesh with high levels of mercury and fish oil supplements are other examples. All kinds of toxins are absorbed by our skin, including the release of mercury which vaporizes after new energy efficient light bulbs fall and break. What most people aren’t aware of are the ENDOTOXINS (toxins produced inside the body) in many of us.

Many of us have conditions such as Ulcers (H. pylori induced), or conditions like Hidradenitis, where due to highly inflammatory processes taking place in the body, one must take numerous courses of antibiotics. One example is Cipro(floxacin) which is prescribed to treat bacteria which take advantage of the host’s vulnerability. Then, as a result of yet another complication occurring in the gastrointestinal system, the immune system becomes damaged and results in numerous severe allergies and intolerances. At this point, the usual healthy bacteria in the gut are replaced with a whole array of other less healthy, opportunistic pathogens. These pathogens take in nutrients from the body but they also release waste into the hosts body. The wastes are known as endotoxins because we have no useful need for this biological debris. If one has any of these inflammatory/infectious scenarios over the course of many years, one would know well that the body becomes very toxic with the accumulation of combined endotoxins and exotoxins. Overwhelmed, the body cannot handle any more. I myself had taken a few doctor prescribed courses of Cipro(floxacin) as needed. I wonder how many more people have been negatively affected because they took this or another antibiotic similar to this one. In all likelihood, they don’t have the foggiest notion that the two (cause and effect) may very well be connected. Antibiotics actually increase the production of nitric oxide in the body. This in turn increases the production of another poisonous byproduct peroxynitrite, which contributes to an even greater state of toxicity

As the up and coming authority on the etiology of MCS and many other related disorders, Dr. Martin Pall explains,his theory that sees nitric- oxide production occurring in excess. Subsequently, the production of peroxynitrite, especially in larger amounts is poisonous to the body. With an ever accumulating toxic load, the body simply cannot tolerate the toxic effect, so it takes its toll on various, differing organs and systems in the body. This helps to explain why there are so many symptoms in so many body systems. Add to that the ubiquitous use of pesticides, and exposure to mold in inferior housing that MCR’s are ‘lucky’ to afford. Often they are mislead and intentionally deceived. By the time they realize what is going on, it is too late because they are not well enough to relocate. Still, as in my case , after a serious motor vehicle accident (MVA), I was excessively irradiated with x-rays and nuclear medicine exploratory tests. The sum total is that I am now so ‘toxic’ that if feels as though I were being treated with chemotherapy on a daily basis. I am nauseated and throw up violently most of the time. I have excruciating headaches and painful GI cramps. I am dizzy, have weakened muscles, and suffer horribly with arthritic joints. I have numbness , tingling, and pins and needles in my fingers and toes to cite a few of the serious signs and symptoms.

The saddest part of all is that we are forced to live with these afflictions in isolation because being near people is risky. Not knowing where people have been and what THEY may have picked up in terms of unsafe chemicals, IS potentially life threatening. We are forced to suffer in silence lest we be labeled as psychiatric patients with mental illness. If we should be fortunate to learn and understand the truth, and share it with our family doctors, we are again mislabeled, ridiculed. misjudged, and let go by our employers. We then experience just about every existent medical, legal and social injustice. Worse, we are accused of being hypochondriacs, lazy, and lacking motivation to get better in order to resume our work (often professional) lives.

The expectations are for us to stop behaving this way… to stop perceiving ourselves as victims, and to get on with our lives. This spoken by the people who are supposed to know and/or love us the most. Most of us are betrayed and abandoned by our families, friends and health professionals all because of our invisibility, the lack of able-bodied representation, and lack of funding to support the paucity of unbiased research. This would validate our suffering and better elucidate the details of this illness. Ignorant of the latest, available research findings supporting the physiological etiology the public is unaware of genetic vulnerability, hereditary predispositions, co morbidity, and the now identifiable biomarkers for the disorder. Therefore, successful ways to ameliorate the condition fall short. All of the potential support systems ’ remain in the dark ‘. Medical personnel, families, and friends are deliberately misinformed by pharmaceutical representatives who fail to inform completely or who deliberately with-hold vital information(ie possible interactions with other medications,and potential longterm side effects).

I consider myself to be one of the fortunate ones in spite of the fact that I am in a temporary single dwelling with temporary financial assistance. I am knowledgeable about the illness and have found a compassionate, equally informed doctor. This dedicated physician understands, validates, supports and assists me in any way he can within conventional medical limits, I have acquired new, loving and caring friends who believe, accept and support me. Most significantly, there is an extraordinary person who recognizes my worth… unlike some of my siblings who refuse to do so. He has offered his time, his motivational skills, and his financial resources, The reality is that the support he offers has limits. It is hard to believe but the siblings see my hardship and suffering as an affront to them ! They feel that I should not be embarrassing them with my “melodrama and need for attention “. Further, they fail to comprehend that I have the insight and competency with which to accomplish the necessary recovery goals.

That is why correct treatment in the way of safe MCS housing — appropriate trigger-free shelter (free from chemicals,scents,mold, and pesticides), access to MCS safe medical care /facilities, a healthy diet free of pesticides, food additives, preservatives, flavor enhancers, and often gluten as well, is critical for our ongoing, long-term recovery process. Literally and figuratively speaking, we do ‘ache’ to recover. As anyone will tell you, if we do succeed in accomplishing this , it is against all odds that we do. Therein, lies the problem. In any other state of illness, mental illness included (which this is not), any person has the right to be fairly assessed, treated, and monitored with respect and human dignity. This is the only malady that exists whereby the conventional medical profession knowingly accepts the present directive not to provide the accurate diagnosis, and to not treat the patient. Rather. the health care provider is to refer the patient with (implied) ‘mental illness’ to a Psychiatrist for treatment. There, the patient is quickly diagnosed with “a panic disorder” complicated by “recurrent depression” and is prescribed an antidepressant. Most often, this is not tolerated well and complicates the picture further delaying proper treatment. In doing so, the personal or family ‘doctor’ actually does (more) harm which completely violates Hippocrates’ oath asserting, ” first do no harm “!

What is badly needed is a body of (health/legal) advocates, whose members and respective committees are well versed with the medical/legal aspects of the condition. They would be able to correctly target and address the appropriate people who could modify existent policy and procedures to include those of its upstanding citizens who are presently not able to ‘stand up’ on their own and for themselves ! Meantime, I must find MCS safe affordable housing for myself even if I must share it with another like MCS person. This can be a difficult undertaking as no two MCS individuals are the same in terms of tolerance. If you do not have a permanent, sustainable home where you can avoid the inciting problems, anything else you do is being done totally in vain.

May you all with MCS and any variation thereof (CFS, FM, EI, ME, GWS, etc.) be blessed with a cure and an end to your courageous plight.

Rochelle

May 20, 2011
3:47 PM

dear y’all, the issues of environmental sensitivities isn’t going to improve until our corporate/technology producing zeitgeists can improve upon a cartesian sense that the world is merely potential modules for ‘hard technological shaping, a sort of human centric allelopathic reflex. consider a real bugaboo for me. genetically modified agricultural and marine organisms. it would seem that: there is definitely a need for new labelling laws on products that have gmo contents. if a quick meal is wished for, one could seriously be playing a sort of boolean roulete. also in dealing with energy we may face the exact same situation. visualize getting a readout for one’s electric bill :”lets see a percentage of this energy was credited from some private entity, with a solar or wind farm, however….” so from a gaian perspective the individuals with sensitivities are the new indicator variants of our species, facing selection pressures, and in a fashion hiv is the same situation; and we become discomfitted by the the persons anguish when he or she is close. why i posted this is a new awareness that has been growing with me of how our collective unconscious could sort of stay, unconscious without :” aaaagh”, networking, and personal responsibility. ie guess some of us could sort of be merely asleep, and / or sort of drugged-into-a-nightmare. and missing , in the latter sense an opportunity for needed human evolution?

May 17, 2011
4:51 PM

I’m so glad I happened upon this site again. I have nearly 2500 (the max) favorite places, and in trying to update/organize them, I’m going through my links and came across this one—-again!

I never knew there was an official “MCS” month!

Anyway, many of you have said a lot of the things I’d say, too. I’ve been chemically sensitive (knowingly) for over 25 years, but have been suffering with severe neurotoxicity, fibromyalgia and other things for more like 35 years. Before I became sensitive (and I’m EXTREMELY universally sensitive to most things, chemical and now natural, including EMFs and mould), I had no obvious reactions to ANYthing! For me (and probably many people), the body burden and problems started with my amalgam fillings (the first ones when I was about 9), and being an artist, I was exposed to numerous toxic materials in a wide variety of ways.

Long story short: my body burden was gradual, along with my symptoms. Many times people in my life (and many not) do things that continue to harm me or cause me pain, whether occasional or constant. At one point, though, I had to admit that if I had never become chemically sensitive, I would’ve had a very hard time comprehending this illness. As thoughtful and considerate a person as I am, I think that (at least years ago) I would’ve scoffed at the notion of anyone being THIS sensitive.

It’s hard to be patient with other people who offend us with exposures (or their words) when we suffer with something as debilitating as this can be, and certainly dramatically life-altering, but some of these people simply can’t “get it.”

Life IS very hard for us, some worse than others, but it’s hard for a lot of people. We have the misfortune of having the kind of illness that, in most ways, is “invisible,” just as we are nearly “invisible” to the world at large. Twenty years ago, when I fought for 8 years to win Disability (in the U.S.), it was barely recognized. Now, at least, it’s more “out there” and people, in general, are becoming more aware and open to the damages that are being done, not only to the environment, but to we “animals.”

It’s funny, but with the decades I’m dealing with this illness, I only compared the act of people wearing (or using) fragrances as being the same/similar as smoking. It is an invasion of other people’s space, and not just people who are sensitive or react. Not everyone wants to smell what you want to smell, and forcing other people to have to smell it is truly an “invasion of space.”

And most retail stores will continue to use fragrance (of ANY kind) because they can “sell” things this way, just the way they believe “sex sells.” It’s a sad world we live in and we suffer the trapped life we do. Try to do your best to spend most days (some days it’s impossible not to cry and be angry) grateful for the things you DO have, including the gift of waking up each day. Find the things you CAN do and don’t dwell on the things you can no longer do. It’s a matter of learning to cope. Donna

May 14, 2011
12:29 PM

Someone should let stores like Shoppers Drug Mart know. They have huge perfume counters right by the in door. I have to plug my nose to pass it. My brother will only enter through the exit door.

May 14, 2011
8:29 AM

Please watch Organza Market episode , you will love it.

http://www.facebook.com/pages/Shaw-TV-Winnipeg/123207671070425

May 13, 2011
2:18 PM

What I think everyone should know about Chemical Sensitivities is that this condition can happen with just one over-exposure to chemicals, scents, pesticides, etc. Thnk YOU’RE immune? Think again! I was going to the gym regularly, growing and eating my own organic veggies, I was on the Dean’s List at one of Canada’s top Universities as a Mature Student — I was living the dream when it happened to me. By the way, I agree with another commentary that names Cipro as part of the mix for Chemical Sensitivities — I would have to agree that it was part of the cause for me.

May 12, 2011
2:02 PM

What is the one thing we want readers to know about chemical senstivity?

Housing is the hardest need to fill to for those with ES. Safe, fragrance-free, chemical-free, mould-free and affordable.

That combo is ever so hard to find for those with ES, worse for those that have become unemployable. But sometimes money is not the always the issue.

I had a call from a property manager living in her car because she was unable to locate safe housing. She freshened up in public washrooms and kept working by contacting clients with her cell phone. She was calling me from San Diego as it was warmer living in her car there. She was looking for housing anywhere from Vancouver, Victoria down the coast into the USA.

Young people contacting our organization that have become sensitive tend to couch surf and move frequently. Older ones will take unsafe housing and become sicker just to keep from being on the street.

This is a health issue and safe housing is a medical need for those with ES.

I would like to make readers that are in need of safe, affordable housing aware of a new organization in Vancouver composed of those who provide rental acomodations called the Rental Supply Coalition.

Later this year, the Coalition plans to lobby the Federal Government for changes to tax laws in order to stimulate the construction of rental housing. They also want the Federal government to implement a National Housing Strategy.

Renters can have input into this process by visitng the coalition website and telling thier personal stories and the barriers they have to obtaining safe, affordable housing.

Visit website: http://www.metrovancouver.org/RentersSpeakUp/Site/Pages/Coalition.aspx

ES is an invisible illness and those with it are always on the edge of homelessness. I hope telling the stories will help create direction in proposed new housing.

Karen Forbes for the EHA BC www.ehabc.org

May 12, 2011
12:21 PM

I have both MCS to perfumes and any fumey chemical AND EHS..reacting to cell phone waves,..(anything emitting microwaves really) including ovens, laptops, satellite dishes, cell phones etc, but also react to scanners in stores, fire alarms, house alarms, light motion sensors in paper towel and public soup dispensaries, large motors and more. Had nerve damage done by malathion dropped on our homes by planes which I got on me in several places 13 yrs ago.

May 11, 2011
10:27 PM

I would like everyone who does not have it to experience MCS for just one day. That’s probably the only way they can truly understand how this condition affects us. I also have chronic leukemia but MCS is the more difficult condition because it’s a daily struggle. I’ve often had to pass up on experiences—social, educational, professional—because of MCS and my life has become much more limited. Our family tries to take a vacation once a year, but sometimes I become ill just searching for a hotel or motel without fragrances. Even when I call ahead of time, there’s no guarantee the room will be healthy for me. Last Saturday I had to leave my niece’s graduation early because, even though it was held outdoors, the fragrances worn by others made me sick. In the entire area I couldn’t find one place where I wasn’t exposed to someone’s scents.

As I remind my husband and children, the chemicals in the fragrances are harmful for them too, but I’m the only one who reacts to the dangers. They are actually benefiting from living in a fragrance-free household. I wish everyone could understand that.

May 11, 2011
5:40 PM

I’ve been disabled by MCS and CFS since 1999, after working in a chemical factory for 10 years. Would you believe I’m still fighting for worker’s comp despite having 2 doctors say it is work related? Just over 5 years ago, we moved up north into the woods to escape the bad air quality. Up here there is no industry besides logging, no major highways, no big farms and a small population. My closest neighbour is a 1/2 mile away. Our 15 year old log house was built from huge square logs out of two old barns. The floors are hardwood and the inside walls are unfinished tongue and groove pine. No drywall or paint, no basement. This house sits high on a hill and has an 28 ft dug well with delicious water. This place is my salvation! We were lucky enough to be able to buy it after cashing in all of our RRSPs. Our small goivernment pensions cover the rest, but it’s tight. Now, instead of feeling sick half of the time, like before we moved, I only feel that way after known exposures or a very rare unexplained bad day, which doesn’t happen often! My physical problem is primarily partial paralysis on my left side. It gets much worse after exposures so that I can hardly walk. My social life consists of speaking to the odd person at a restaurant or sitting in the truck in the parking lot of the grocery store smiling at people. It’s hard to meet people whenyou have to avoid them because they make you sick! None of us choose to live this way!

May 11, 2011
4:59 PM

Annette,

You may want to check out some of the documentation we’ve gathered in “medical” section. You may be able to use some of the info there to change some things at your hospital. See in particular “Creating Access to Health Care” and under “Hospital Stays & Protocols”, see the MCS Protocol for the David Thompson Health Region in Alberta. Here’s the link to the medical section: http://www.mcscanadian.org/medical/index.php

You also DO have the right to accommodation at work re disabilities. I’m working on gathering the info to support that now, but don’t yet have it ready.

Best of luck to you (and all) LaVerne

May 11, 2011
4:16 PM

I have scent sensibilites. I find that the scented air cleaner products like glade mist etc are very hard on my sinuses and my lungs.

May 11, 2011
3:56 PM

Hello i have had Environmental sensitivities for the last twelve years and i also work at the hosipital and i have allot of problems with burning sinuses every day because of staff as well as visitors using scented products in there hair and on there skin i am getting to the point that i am going to have to get more education so i can work from home in a scent free Environment i not only have burning sinuses ,headaches but i get exposed to much through the day i have to come home and sleep as i am wore out from fighting the burning and tasting of scented products yes it is like waking around with a bar of soap in my mouth i am so wore out after work i have to sleep…people when you tell them about your sensitivities they shrug there shoulders and tell you it must be in your head that peeves me off

May 11, 2011
3:49 PM

First, a huge thank you to David and yourself for all you are doing to bring awareness to the issues we as a planet, face. And a resounding thank-you to you both for supporting our MCS/Environmental Sensitivities Awareness month.

I most want people to realize we need help and we need it urgently and we desperately need others to help us get it as most of us are too ill to advocate for ourselves, let alone more globally. We need access to adequate medical and dental care which is denied us due to the use of personal care products, over use of pesticides and toxic cleaning supplies used in both hospitals and offices.

We desperately need affordable, safe housing built without toxic chemicals as the first and only proven treatment is avoidance of same. As a community, we have far too many people living in places that are utterly unsuitable where exposure to such chemicals cannot be avoided due to others’ use of them which causes even more damage, including “end-stage” damage.

Dr. Alison Bested, a well-respected Canadian specialist said the following in an interview at:

http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808949

[Begin quote.] Patients like Pickett are routinely dismissed as head cases by the public and physicians alike. But it’s an attitude that stems from widespread ignorance, a lack of awareness and an invisible population of sufferers, says Dr. Alison Bested, one of the few specialists in Canada and author of Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. Unlike cancer or AIDS, which boast powerful lobby groups and advocates, fibromyalgia and its “sister illnesses” have no champions, says the hematological pathologist and doctor at Women’s College Hospital’s Environmental Health Clinic.

“These patients are severely disabled. They don’t have the energy to lobby and make this known,” she says. “They’re much sicker than AIDS patients as 50 per cent are housebound and bed-ridden. It’s an invisible illness. People may not be dying of this, but they lead long, difficult lives.” [End quote.]

As well, for those out there who have no support and need information, I’d like them to know about MCS Canadian Sources, a web-based support group (that I run) for those suffering with MCS in Canada (though we have members worldwide). Join up details can be found here (as well as links to some other good groups): http://www.mcscanadian.org/

MCS is so very isolating and the learning curve in terms of making our homes/environments safe(r) is steep. If you or someone you know needs support in dealing with any of the varied issues that MCS/CFS brings to our lives, or if you need practical information such as sorting out what could be causing reactions and how to remediate them, please join us. (Significant others, family, friends, medical professionals and other parties interested in the issues and challenges we face are also welcome!) Lots of good, practical, helpful information, some of which is highlighted below, can be found on our website (which we are currently upgrading, so please excuse the mess!)

Medical Information: http://www.mcscanadian.org/medical/index.php Here you’ll find lots of information ranging from case criteria and definitions to finding a knowledgeable physician, naturopathic or other health care personnel, as well as information to help educate your doctor. We also have lots of information to help make your hospital stay a successful one, including both ambulance and hospital protocols, as well as information on creating access to health care.

Dental Information: http://www.mcscanadian.org/dental/patient-information-dental.html This area includes listings of dental professionals, information about anesthetics, mercury amalgam removal and lots of other patient information to help your dental visit go smoothly.

May 11, 2011
3:39 PM

Thanks for writing about this topic. I am chemically sensitive. Many of the scented products contain endocrine disrupters such as phthalates which I think impact me and cause an almost instantaneous painful flushing on my face (it triggers a rosacea flair up). Do you have any information with regard to phthalates used in common laundry detergents? It seems that more and more people are covered in laundry detergent scents. This is making it very difficult for me to navigate through my life, and I am going “out” less and less.

May 11, 2011
3:09 PM

My problem is Cigarette smoke. I smoked for 5 years, After I was diagnosed with mild Allergy related athsma I quit. In 2007 I was Diagnosed with Environmental Sensitivity , specificly to Cigarette smoke. The scent causes the alviolii in my lungs and the mucus membranes in the sinus throat and lungs to go into overload to a point where breathing is difficult for me for weeks after. People have the SEVERELY MISGUIDED BELIEF that if you put a cigarette in my hand that I would have to break out to be allergic to something… This ISN’T THE CASE! The allergy is one thing Apparently the sensitivity IS ON TOP of the ALLERGY!

May 11, 2011
1:32 PM

I would like to state that as a person sensitive to mould and now wood working chemicals, I am not different from you.

I have the right to be here, to live in health and peace in my home, to run a business, to rent an apartment, to be treated with respect, just like everyone else.

In my province of Newfoundland, this right is not yet upheld, nor does society at large have any information about sensitivities.

The thing is, ANYONE could become sensiitive, so it is not wise to misunderstand me.

May 11, 2011
1:17 PM

The one thing I would like everyone to know is that those of us with MCS are not made sick by the smell of a scented product, but rather the chemicals that comprise the product. I suffer neurological shut down when I encounter scented products and thus I must remain largely in isolation.

I see BR posted a question asking about stain master carpet being ‘green’. The answer is NO it is not. The company is ‘green washing’. The only way that carpet would be ‘green’ is if you choose that as the colour :)

May 11, 2011
12:02 PM

Wow, these stories are so heart-wrenching. Your personal accounts really drive home the real dangers that chemical exposure in our living environments pose for so many individuals. Thank you so much for sharing your stories, links, and supportive words. ^KD

May 11, 2011
10:04 AM

I’d like smokers to realize how far second-hand smoke actually drifts, even when it can’t be seen. A fellow passenger gives some distance when he smokes while we’re waiting for the bus, which I appreciate, but even if I’m upwind from him and several feet away, I still react to it.

TransLink’s bus schedules lay out various policies for on board, and one mentions fragrance sensitivities, asking people to use them “moderately.” But deodorants, shampoos and especially hand soap are scented, too.

To my surprise, airline stewardesses on my recent flights wore fragrances, which is not only unnecessary, but particularly bothersome when the same air is circulated throughout the cabin for 9 hours. Abstaining from wearing perfume on a flight should be common courtesy. I brought my own soap so I could avoid the chemicals they use as washroom “soap + air freshener”. (Gross!)

May 11, 2011
9:31 AM

Does anyone know about Tuflex nylon carpets which are “stainmaster”. The company says these carpets are” green”. Is stainmaster relatively safe?

May 11, 2011
9:25 AM

I have been recently diagnosed with MCS. While I may have some relief, moments or days during the week, my condition is such that I have been mostly bed-bound for over 6 months with a myriad of debilitating conditions. In my experience it is very difficult for people to comprehend the reality of this condition.It is truly an unbelievable state to live with. Here are some thoughts I recently jotted down describing what keeps me going through this experience.

WHAT IS A PERSON TO DO?! -Keep the hope -Trust that it is all good -Believe in this person -Remember to smile -Always keep trying -Never give up -Recognize the progress -Take this opportunity to appreciate the gift in everything at every moment -Envision this person being at the height of well-being -Get to know the true greatness of this person -Accept this person unconditionally -Love this person unconditionally

I wish thank all those who know people with MCS who accept them in the condition that they are in without judgement. This is a form of much needed support that a person living with this condition truly needs.

May 11, 2011
9:18 AM

I’d like to know where we are supposed to live when we are disabled, and therefore unable to work or have enough money to build our own non-toxic homes? Safe, non-toxic housing just cannot be found with what provincial disability benefits provide for shelter. Toxic chemicals do not respect property lines or personal boundaries, but freely enter our bodies when we breathe, so that whatever toxic products our neighbours use can completely disable us, and there’s little we can do, since people are legally allowed to use whatever they want (even if they know we will be harmed) Toxic chemicals are found in almost all laundry, cleaning and personal care products. So, there is a right to pollute, yet we have no rights to clean, non-toxic air even when medically required. Many common and cheap building materials are toxic and completely disabling for people with ES/MCS. Air”fresheners” can permanently ruin an otherwise safer place! See http://www.equalityrights.org/cera/?p=1004 Other disabling medical conditions have access to health care and treatments. Our treatment is to avoid the substances that trigger us, yet there is no assistance to do so, no subsidies or health insurance coverage. Yet, if you get cancer from the same chemicals, there are many treatment options available, and cures are possible. There are so many systemic obstacles preventing people with ES/MCS from accessing safe housing or medical care, safe food and water, safe clothing, friends, family, work, community… When there’s no place safe to live, then what? A life of pain and struggle, just to get through hour to hour? How many are homeless, or commit suicide because the pain is unbearable? It wouldn’t be that difficult to provide safe non-toxic housing. It is done by those who can afford to do so themselves, so why isn’t there any assistance for those of us who can’t afford to do so but whose housing also acts as life support?

May 10, 2011
2:54 PM

Dear Lindsay Coulter, Queen of Green,

You asked, “If you suffer from Environmental Sensitivities, what’s one thing you would like others to know?”

I have lived in relative isolation for a decade following the perfect storm: arsenic poisoning from well-water on Bowen Island, serious and immediate side effects from the anitbiotic Cipro, and a barrage of moth ball fumes planted throughout my neighbours lawn to deter cats. I live in pain from Multiple Chemical Sensitivities with burning skin and sinuses and lungs and aching teeth and numbing of my face with eventual anaphylaxis. What I would like others to know is this: when you have been informed that scented products cause pain to others, believe them. This is not a dreamed up control tactic, it is real. Every interaction with people causes pain and trying to find a way to “live” includes for some of us, moving into the forest to avoid laundry vents from houses, never going to resterants or concerts, never sharing a car ride and always driving alone, declining invitations and not having company in our homes, and not being able to be confined in a plane for travel. The worst of it is staying employed — many have had to leave their jobs because there is little or no support. Please don’t say to me, “Well it didn’t bother you last time.” Every interaction requires we endure a level of pain. Each moment brings a different mix of chemicals, some easier to manage than others. Remember, you don’t want to hear about my pain level anymore, you take it as an personal insult about how you “smell”, so I try to endure for the sake of being in the company of family and friends and being employed. This is more than a health issue for some, these offending products are riddled with carcinogens. The skin is the largest organ of the body — what we put on is absorbed. What we breathe into our lungs is circulated. Be open to learning more. This is everyones issue.

Jo-Anne Chiasson, Registered Psychiatric Nurse B.C. Co-ordinator Global Recognition Campaign Multiple Chemical Sensitivities and other Chemically Induced Illnesses www.mcs-global.org More coordinators needed. Email: justnonscents@telus.net

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