Chemical sensitivity: the illness crippling people, dismissed by doctors

Chemical sensitivity: the illness crippling people, dismissed by doctors

In the beginning it’s like a science fiction movie. I’ve always likened it to it. You know, “Is this real? Can this be actually happening? Chemical sensitivity is a very real, physical disease. I could possibly liken it to being allergic to a cat. And having a cat rubbed in your face every time you go somewhere. Patients get dismissed time and again and again. That they’re simply told it’s in their head. When you first start asking the questions, “What is in this bottle that is making me sick?” It opens up this incredible Pandora’s Box. It’s very similar to tobacco smoke. The fragrance problem is really one of what I call, ‘second hand scent’. The feeling is as if the eyeballs have suddenly got a bit too big for their sockets. I know that sounds crazy, but that’s how it feels. Best selling author, Kate Grenville experienced years of mysterious symptoms which she always put down to stress. It did take me a very long time to put two and two together and I can remember the day it happened. Somebody came back from overseas with a bottle of, duty free, something or other. Put it on and immediately I got this ripper of a headache. And it was the moment which I thought, “OK, there is a cause and effect thing happening here.” My life is now completely shaped by this notion of fragrance. When I meet friends, I no longer embrace them. Public transport is a nightmare. I can no longer shop. I can’t even go to the hairdresser and get a hair cut. In a million tiny ways, I can no longer live a normal life and I’m someone with actually quite a mild version of this. This problem of adverse health effects from exposure to common chemical products like fragrance products is an epidemic. Professor Anne Steinemann has been researching chemical sensitivity for 25 years. Her latest research found that one in three Australians report health products from fragranced products. For some, the symptoms can be severe. An estimated one million Australians have a condition known as Multiple Chemical Sensitivities or MCS. For someone with MCS, an exposure to an air freshener can cause them to have a seizure and lose consciousness And yet the grotesque thing is they’re called ‘air fresheners’, when in fact they are kind of ‘air toxifiers’. At Air Wick, we know the power of that first wiff of your favourite scent. If I’m exposed to air fresheners, I get headaches that feel like my brain is stinging. As soon as the chemical hits her, you can see her face just start to go red straight away. I am housebound on the orders of my doctor because the only way to avoid getting sick is to avoid these chemicals which is to stay home. And that’s very, very lonely and frustrating. A friend of mine with chemical sensitivities took his own life due to isolation and the frustration involved in trying to create a safe living space. Michellina and Dan are building this house to be a safe haven from fragrances and other chemicals. People will come through this door. They will then change into safe clothes, so that they can enter our house without being a risk to me. On the rare occasions that Michellina does leave the house, it’s with this – an oxygen tank. Sorry I have a medical condition and I need something that has no fragrance or perfume in it. It’s a moisturiser, yeah I can’t go in because they sell fragrances. Like even here, my eyes are stinging and I’m wearing a mask and oxygen. It’s not what we understand as a normal life. MCS can be extremely debilitating. Dr Christabelle Yeoh is a GP, who sees dozens of patients with MCS. But most doctors don’t recognise it. And attempts to have MCS officially classified as a disease in Australia have been rejected by medical authorities. Patients are told they just have to see a psychologist or psychiatrist because of their strange symptoms that don’t match up. A medical diagnosis don’t match up to one in the system. In 2010, a federal government report recommended standardised criteria be developed to diagnose MCS. But in the years since, it seems that little has changed. In a statement to The Feed, a spokeperson for the Federal Department of Health said, “The symptoms of MCS are heterogeneous and non-specific and there are no validated diagnostic tests for the condition and so the Department of Health does not collect data on its prevalence. Nobody expects a miracle cure, but we would like to be believed and understood. There’s plenty in the literature now to show that these chemicals are really adversely affecting our bodies from our immune systems to our mitochondria to our nervous system. When you first start asking questions, “What is in this bottle is making me sick? it opens up this incredible Pandora’s Box. That one word fragrance could cover anything up to a couple of hundred different chemicals. There is no law anywhere in the world that requires a fragrance to disclose any or all of its chemicals. But for the most part, they all contain some sort of petrochemicals. Johnson’s Baby Cologne is now in three familiar fragrances. Heaven, Powder Mist and Morning Dew. Neda Nematollahi is a PHD student, working with Professor Steinemann. I found hazardous air pollutants such as formaldehyde coming out of these everyday fragrance products. If these chemicals like formaldehyde and acetaldehyde are coming out of the smoke stack or tail pipe they’d be regulated, but if they’re coming out of an air freshener they’re not. The fragrance industry is self regulating. Talk about putting the wolf in charge of the sheep. I was absolutely shocked when I realised that the very people who make fragrance are well aware that it could have bad health effects. When you look on the website of the International Fragrance Association, they actually have a list of substances which they are using in fragrances which they know either create allergies, give people headaches like me, neurological problems or very commonly respiratory problems – coughing and sneezing. The Feed contacted the International Fragrance Association for comment but did not receive a response. And the Australian industry peak body, Accord declined to provide an interview or statement for this story. The sources of these problems, the products, are major industries. In 2016, the global fragrance market was worth than 50 billion dollars. The power of the fragrance industry is overwhelming. All those terrible ads particularly directed at men saying you won’t get a girl unless you spray your underarms with this stuff. Frankly, give me BO any day rather than a headache. Ultimately it’s government that has to push the chemical industry that it needs to be in line with long term health and safety and it’s not. In the absence of tighter regulation of these products, some are calling for work places and public spaces to go fragrance free. Just like cigarette smoke, I really see that increasingly there is the adoption of fragrance-free policies just like smoke-free policies. There have been a few test cases in Australia. Where workers have taken their employers to court saying “I have the right to work in an office that doesn’t make me sick.” You want to recover, you want to find a way out of this way of living, cause it can be hell sometimes. If that doesn’t happen I’d like to find a way to accept the limitations of my life. And find joy anyway. People with multiple chemical sensitivities can be thought of as canaries in a coal mine. I see them as a warning sign for the whole population. We’re human beings, we’re all chemically sensitive to some extent. The rest of you may not be immediately affected by this but the fact is, there’s methane in this mine. Let’s get out.

40 Replies to “Chemical sensitivity: the illness crippling people, dismissed by doctors”

  1. Chemicals are overwhelming the 🌏 environment to the detriment of humanity and our habitat. The sensitive people are legitimate warning ⚠️ signs. Everyone must work towards a healthy habitat for body ❤️, mind 🧠 and spirit to thrive in a communal happiness objective.

  2. It's a self reinforcing cycle of them thinking frangrance causes this and then them experiencing symptoms because of that belief.

    They skip over the "Most studies rely on self-reported symptoms", meaning they have limited if any scientific grounding…

    "Give me BO any day rather than a headache", I don't know about you guys but I've had super bad reactions to peoples BO, almost to the point of vomiting.

    Very poor reporting from the SBS, no reporting of the oppositie side. Only fear mongering from a very small (I recall them saying 12 people or something) reporting bad health effects.

  3. Hmmm, Multiple Chemical Sensitivity certainly sounds to me like a vague, non-specific and unscientific allergy that doesn't merit classification.

    I don't disagree that fragrances and body products contain a great deal of undisclosed, and potentially harmful chemicals that could cause specific physical reactions in some (1/3 people seems to be a bit of a stretch). But simply giving a broad label to what could be a specific allergy to one, or a family of related substances, is a great way for people predisposed to malingering or hypochondria to exaggerate the symptoms or suffer needless angst and trigger phobia. More importantly, simplifying and broadly categorising what could be hundreds or maybe even thousands complicated biochemical reactions as an "illness", is counterproductive to important research into the potential substances/complex physicochemical reactions that could be the cause of these symptoms.

    From this brief short, in my opinion, there does seem to be some sort of somatic component to the reactions these women are apparently subject to. And it seems it could be related to several other 'chemo-phobia' type presentations, and not unlike the sudden surge of people self diagnosing as 'gluten intolerant'.

  4. This is such a poorly constructed segment. You've offered a one-sided perspective that reinforces the harmful beliefs of people who suffer from paranoid delusions. Sure, some people suffer from allergic reactions to certain substances but these are testable, repeatable, and mostly treatable. That is not what this is, and it's no coincidence that a complaint arises only when the "harmful" substance has an identifiable odour.

    My aunt "suffered" from MCS. She also suffered from schizophrenia. When her legitimate condition was being kept in check with medication the MCS was never a problem. When she went off her medication it returned. For every 99 articles online that espouse the truth, there is one like this that gives people like her a reason to believe that a delusion such as MCS is real. She died of complications related to the malnutrition that she suffered from the delusion that foods contained impurities that would kill her.

    Perhaps you should consider the real world consequences of supporting poorly researched delusions with no scientific proof.

  5. Good to see SBS focusing on an issue that is becoming a problem for an increasing number of people. A very well researched segment in fact – Dr Anne Steinemann is a world leading researcher in this area and Kate Grenville one of Australia's most respected authors who has recently published her thoroughly researched book on the chemicals that are rampant in so many household products. People afflicted with MCS are clearly the canaries here, the first to become affected in our increasingly toxic world, and if more understanding is not gained about what is happening there will be more sufferers in the future.

  6. Well done SBS. Thank you for giving us a voice. It's been so long since the MCS review and all we have is disability rights. People are so much more than a disability. If the disability is mocked like chemical sensitivity is, and it crosses over into so many other illnesses, just that shows it's real.

  7. Perhaps, instead of jumping to conclusions regarding sufferers, people should support proper research. In many cases, if you look below the surface, abnormal innate immune activation is present. Also brain inflammation can be demonstrated via MRI spectroscopy, as it was in my case. Changes to brain structures and also brain lesions can found and analyzed via NeuroQuant. The technology exists to understand what is going on if it is applied.

    In my case, proper testing and analysis of the results led to treatment that was able to noticeably improve my condition. Please do not jump to conclusions and write people off because you do not understand. Something is happening to many people that we need to understand better.

  8. The feed what terrible reporting. Did you ever think to consult some science based medicine while researching this piece?

    Those at the feed and people claiming MCS would benefit from reading "Belief: What It Means to Believe and Why Our Convictions Are So Compelling"

  9. I'm glad to see there is some recognition here for people who suffer from MCS. It would be very hard for them to be around others as we're all using products their bodies can't tolerate. For me personally I can't tolerate bad smells and they do trigger symptoms on me too. For example if I'm near anyone with bad body odour I have to get away otherwise I start having spasms. I don't have MCS though, I live with other diseases. I guess we're all different.

  10. In America, I guess we are fortunate that we actually have a medical name for this now. The American Medical Association is calling this illness, Toxic Encephalopathy. I am one of those people who is "Allergic to the 21st Century" as I like to phrase it. My doctor is one of those who believes in this and has done a lot of research in this area. Check out My CYP450 on YouTube for his video's on this.

  11. I use to be able to wear strong perfume many years ago but I can't any more due to the strong sent I only use essential oils don't use air fresheners either

  12. u do know ppl r not gonna wanna go to ur house if right away they gotta get undressed n then put in someone elses cloths right?? It sucks that you have this issue. Have you thought about positive air pressure?? It makes air push outta all cracks and openings so that nothing in the air can come in the house and anything in the house gets pushed out. U should look it up. Oh n in case you think its just reg outside air its not. It has to run thru filters n stuff to be cleaned before its vented into the house

  13. The effects are not unknown, unfortunately the concentrations in which the population may suffer are also unknown. When I have a migraine being exposed to cheap perfume feels like I get hit in the head with a brick, it's only unnatural scents that do it, not flowers or natural environments.

    It's not implausible that some people may suffer reactions to these products. I don't know why it should be considered more than an allergy through, there are those with debilitating allergies that effect their quality of life, they may or may not be considered disabled as well.

  14. The people discounting MCS are unfortunately ignorant.
    I don’t think this is great reporting by the Feed but it’s something & shows some people’s experience.

    MCS is very much real and debilitating. Unfortunately many people lack the ability to imagine that others’ bodies work differently to their own.

    As a psychologist and MCS sufferer I know that psychological mechanisms can affect the experience of MCS and to some degree moderate it’s severity at times, but this is because our bodies are a complex interplay of biological systems, that can never be fully separated from each other. Just as we might say stress will make someone more susceptible to succumbing to the common cold or lead to a worse cold because it impacts the immune system, we don’t say the cold was simply CAUSED by stress. MCS can be worsened by negative cognitions & emotions but it is not caused by it.
    It’s similar to chronic pain (another poorly understood condition). Even acute pain is moderated this way. If I whack your thumb with a hammer, it will most likely hurt! If you keep thinking negatively about & focusing on it & then become afraid of getting hit by a hammer, it will worsen your experience & you can see how psychology plays a role. But it won’t change the reality that every time you get hit by a hammer it produces a real & detrimental impact on your body.

    It’s theoretically possible for the previous commenter’s relative to have schizophrenic delusions & hallucinations around chemicals. But this doesn’t mean other people don’t have it for real (you can have delusions or hallucinations about any number of things that are reality for other people). You can also have both schizophrenia and MCS! Plus, the body is so complex – sense of smell has been shown to be impaired (ie less sensitive!) in those with schizophrenia.

    There has been plenty of research on the toxicity of common fragrance chemicals. As with every human factor, we all fit on a bell curve. It’s perfectly feasible that despite the bulk in the middle tolerating the general societal level of chemicals pretty fine, a decreasingly small portion tolerate them worse and worse; just as at the other end there are people who can survive all manner of toxins much better than the average person.

    There is also plenty of research showing sensitisation effects in humans for all manner of stimuli. The body changes its threshold for producing VERY REAL physiological reactions.

    Then there’s the canary in the coal mine possibility. Modern life is a living experiment. It’s likely there is much science is yet to uncover about the effects of such pervasive cumulative levels of environmental chemicals, in such a way as humanity has not experienced before.

    The people here who are quick to write off MCS would do well to adopt a more intelligent scientific open mind, plus a compassionate one & seek to truly understand the experience of their fellow human beings who suffer immensely & whose experience is only worsened by those who fail to have the human decency to listen with a genuinely open mind and heart. You cannot comment conclusively on what you have never experienced.

    Love to all fellow MCS sufferers & their supporters.

  15. Might I add, unfortunately the ability for MCS to be taken seriously is impacted by all the complex ways psychology plays into the condition.

    For one, being emotionally, psychologically and psychologically sensitive go hand in hand because they are one and the same. Greater emotional sensitivity is caused by greater biologically sensitivity. The biological systems that affect emotion and cognition are effected by everything else that comes into the body – ie every other chemical experience the body has – what we eat, drink, breathe, our gut bacteria, our hormones, our immune system.

    Thus those who develop MCS will often be those who are more emotionally sensitive, outside the average range. This also goes with greater imagination, creativity etc, so already there’s the potential to be written off as psychologically different.
    Then it is a negatively reinforcing cycle because their mental and emotional well-being is worsened by the negative impacts of over sensitivity to chemicals (ie neurological, cognitive effects start to worsen rationality; they undermine mood just like the immune response when someone feels miserable when sick) plus all the subsequent effects on one’s ability to live normally, not being believed by others.

    Unfortunately it’s not surprising that people with MCS are seen just as emotionally & mentally unstable or whacky & eccentric. Especially when things get to the extreme severity seen in the video.

    But people mistake the symptoms, consequences and correlates of MCS as the cause.

    I believe the truth of MCS will one day be understood. Just like the truth that the world is round, illness is caused by germs, women weren’t witches, homosexuality is not a mental illness etc.

    For the record, hypochondria is not a recognised mental disorder, & the proportion of true malingerers in the population is extremely small.

  16. Many years ago a group of children were raised in as close to total aseptic conditions as could be mustered. When they were finally allowed to interact outside of the protected environment, most showed lowered immunity and quickly became violently ill.

    Now, fast forward to 2018.

    Take a person who prides themselves on keeping a clean house. They use hand sanitizer, hospital-grade air purifiers in thier home, and products free of perfumes, dyes or artificial ingredients.

    Thier new neighbor smokes.

    Now, all they smell is cigarettes, marijuana and perfumes from the laundry detergent that new neighbor uses.

    But the HOA refuses to enforce the bylaws. The neighbor is noseblind to what they inundate the rest of the building to, and doesn't care.

    The only viable option is for the person to move, just to be able to breathe.

    Is that all in that person's head?

    As of Febuary 3rd, 2017, HUD made all sponsorships smoke free. HOAs are beginning to add "noxious odors" as a prohibited ingress into neighboring property. In many states, such ingress constitutes criminal harassment and trespass upon the victim's living space in civil law.

    Whatever originates on your property or living space is your responsibility in the event that it negatively affects your neighbors. This is common law going back over 300 years.

    This should be common sense policy for all multifamily dwellings, as it also destroys property valuation and eligibility for insurance underwriting.

    Let's also remember that this is a multilevel issue with elements of risk management, civil liability and environmental protection exposures for a landlord/property manager/HOA or Co-Op.

    Without some control, and no restraint on the part of all living in a particular community, it's a recipe for loss to all.

    Simple solution:

    Stop ruining your home, and in the process, destroy the peaceful and quiet enjoyment for everyone else, while turning your community into a war zone of toxic waste.

  17. Sadly, we who experience MCS do suffer debilitating symptoms to toxic synthetic chemicals in air and on skin . We are limited in what we can use and what we can do, it is a handicapping condition. But, i do not see it as an illness, neither physical nor mental, rather I would say we are the lucky ones, because we go out of our way to avoid synthetic fragrances both for us and our children (and of course any pets) so we may well be the healthier and more fertile ones in the long run.

  18. As someone who has suffered from MCS for thirty years, I found this episode to be lacking. I was poisoned by organophosphate pesticides. A dear friend developed MCS after long-term exposure to dry-cleaning chemicals. Another person I know developed it from mercury amalgam fillings. Another was a professional painter. Another was a hairstylist who developed MCS after becoming a color specialist.. To focus merely on fragrances does a huge disservice to those of us who have had other routes to developing the disease and now have multiple triggers. We must stay away from much more than just fragrance in order to maintain some semblance of health. For instance, pesticides in buildings and in food; herbicides on streetsides, parks, commercial landscaping, neighbors' yards; VOCs in paints and building products; chemical finishes on clothing; chemicals in hair products; car and truck fumes; common laundry detergents and fabric softeners; and the list goes on and on which makes daily living in the twenty-first century nearly impossible. Many with this illness do end up committing suicide becomes it all becomes so hopeless, and the lack of understanding and dismissal by others only adds to our distress.

  19. Hello!! I would like to share this video in Latin America. Is there any way I can get it with subtitles? O permission to subtitle it? Please let me know what we would need to do to get the message out there! Thanks very much.

  20. Mine started to develop after I had Lyme disease. Lots of things give me head aches or make me light headed now.

  21. I'm facing losing my job because of this. I'm a nurse in a care home and they have artificial fragrances everywhere. The reed diffusers are the worst. All the care homes are like this. I can't work in hospitals due to my aspergers as I get too stressed. My life is blighted by mcs and the wretched chemicals people insist on using and wearing.

  22. Multiple Chemical Sensitivity the cause the cureIf you are suffering with this you should watch my video now!!!! True suffer with a True cure.

  23. I have chemical sensitivity and what helped me was EFT tapping. It saved my life. My issue was causing me not to be in my house. My felt sick because I worked at a home improvement store with all those chemicals. When I heart about EFT, I was skeptical but the more I practiced from YouTube videos, I got better. I was able to get back into my house and into my room. Now I'm going to a EFT specialist to help me improve more

  24. MCS is real and causes stress. My triggers are air fresheners, scented laundry dryer sheets, aerosol from E-cigarette (vaping) emission, cigarette smoke, cannabis smoke, auto emissions, insecticides, reed diffusers.

  25. I’m only 13 but I’ve had pneumonia 7 times and for years I was diagnosed with asthma. I had inhalers ( that I didn’t need ) and medication. One day my doctor just flat out said we don’t know what is wrong with your daughter, I’m not supposed to be saying this but I know it’s not asthma. After that my mom did so much research and she talked to people and made friends and learned as much as she could and eventually I was diagnosed with MCS. It’s really hard and I am home seven out of six days of the week because most places smell. I’ve missed countless months of school because of it and I am currently homeschooled. There’s so much more to say but yeah it just feels good to talk about it and to know that other people know what I’m going through.

  26. At frst the medical profession dismissed multiple Sclerosis as a mental disorder. They did the same with Chronic Fatigue Syndrome. Now it is starting to get the recognition they deserve. Hang in there and keep fighting. Someday they will become aware and accepting of the truth of MCS. By the way, MCS is also a componant of CFS in many cases.

  27. The most common cause of becoming chemically sensitive is insecticides. Lyme disease and mold exposure are also common causes. People's symptoms vary due to what chemical(s) caused the problems and were the exposures large or many smaller exposures or several different chemicals.. People spray insecticides in their homes and workplace getting a daily dose not connecting the cause with the problem.

  28. pretty much everyone at my work is obsessed with fragrances. luckily i work alone at night, but they are always burning candles and diffusers during the day and wearing perfume. like do u stink and have to cover things up all the time? if people just kept clean, that shouldnt be a problem. ive had to fight against public area diffusers in my workplace for quite a while. have been looking for new work cause its been driving me away. who knows if ill have to suffer more in another place though. if u must use fragrances, please stick to essential oils or even plants themselves

  29. One of the managers of my building put in all these plug-in. It was horrible. They are finally gone, but the superintendent still cleans with harsh chemicals. Hope he doesn't get this!

  30. Help me please! I have hyperosmia already 3 years ! Now I can’t go outside always stay in home , it’s very stressful. I can feel the smell about 3 meter of more from me . From 2 meter I can say wats name your shampoo or soap! My life is terrible. I can meet a friend. I afraid people, train, shopping and I cans go in toilet with automatic air fresher . If I feel chemical smell I can’t breath, my throat is pain and I had 4 anaphylactic shock. Please help me who know good clinic , doctor or just know good protection face mask! I live in japan. I went in many hospitals and it’s doesn’t help. Write me on WeChat, line or privet yume2905. Telegram lakshme8lux.

  31. After using a perfumed bodycream from L 'Oreal as a teenager, resulting i a skin rash, I decided to use only fragrance-free products. Later when I started to study biology, I found out that I made the right decision. Natural products are not always good for us. Some plants can produce some pretty nasty substances. Definately more research is needed to find out more about these chemicals and their long term effect on human health. Also more doctors should be aware of the significance of biological variation when it comes to the sensitivity of humans to various chemical substances!

  32. You are right Michellina van Loder Re your comment about Wikipedia's outdated and skewed page on MCS.
    There needs to be more public awareness raised of the wide range of bias on that site. Internet users who are always directed in a Google search to Wikipedia information need to know that the content presented there is not neutral. It is not a reputable, credible source of information. Even the original founder of Wikipedia has remarked in interviews that this was a problem with the site.
    For people suffering MCS or who would like to find accurate, reliable information there is a new information resource about MCS at me-pedia. It can be searched by looking up "me-pedia" and search for "Multiple chemical sensitivity". It was created because the information about MCS on Wikipedia was inaccurate and outdated.

    The editors on the Wikipedia page are very keen to ensure that their ideology and bias remains and consistently block anyone who attempts to add current information and the science to the page.

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