How to make a television series, comedy or novel about people with chemical sensitivities (MCS) that is realistic, fair and entertaining
A comedy is a great way to make television that is both entertaining and at the same time educational about minority groups. We show how to do it about people with chemical sensitivities (MCS) along with basic information about how they live.
Keywords: MCS, chemical sensitivity, television, comedy, novel
A comedy about MCS?
People with MCS encounter the same absurdities of life as everybody else – and a great deal more, which a general audience can understand if built up to.
Comedies can be a great way to both entertain the general public and at the same time help humanize people who are viewed unfairly. It has been done for gay men (Will and Grace, Modern Family), Blacks (Cosby Show), nerds (Big Bang Theory) and others.
It can be done for people with environmental illnesses, such as MCS, but it has to be done fairly and by well-informed script writers. This document shows how it can be both funny and fair.
For more on how film has helped gain acceptance for minorities, and how the media has harmed people with environmental disabilities, see the link at the end of this article.
About the picture
The picture at the top is from the comedy series Northern Exposure. It shows the character Mike Monroe who has MCS. He appears in several episodes in the fourth season, which aired in 1992-1993. In this scene he tries to wear a space suit so he can be around regular people. A fun idea, but not realistic in real life. Picture copyright Universal Studios.
The litmus test
A program about a minority that is picked upon must walk a fine line. There are some stereotypes that have some truth to them, but there are also many untrue myths, so be careful.
The litmus test should always be whether the script would be acceptable if the MCS character was instead from a more “accepted” minority, such as a Black person or someone in a wheelchair.
If you can’t help yourself and have to make it “interesting” by focusing on controversies and freaky scenes, please abandon the project. Totally. Go find some other victims. We don’t need more mean-spirited trash like the Netflix series Afflicted.
The maker of the hit series Reservation Dogs, Sterlin Harjo, told Time magazine in 2022 that he wanted his shows to be liked by Native people. That is a good yardstick too.
MCS is a spectrum illness. The severely affected people are the ones who are totally disabled and have to make major changes in their life to exist – in some cases they flee to rural areas or have to live in a “bubble.”
The media has focused on the most severe cases, since they are the most sensational. But the reality is that these cases are only about 3% of the people with MCS (Kreutzer, 1999; Berg, 2008).
A fair portrayal should not use characters who are so severe. Their situations are too far from normal people’s life experiences so viewers cannot identify with them. They will simply be perceived as freaks. That dehumanizes everybody with the illness.
There aren’t many shows about people who are homeless or drug addicts either. Such simply do not attract viewers.
A much better choice is characters in the middle of the spectrum. They are people who are able to hold down a job and in many ways live normal lives, while there are still lots of situations to build stories around. There may actually be much more story material than there would be for the most severe cases, who tend to be forced into isolation.
The majority of people with MCS also have asthma, which is often triggered by chemical fumes. That is more mainstream, so people can better relate to it.
Virtually none of them smoke, and they frown upon anyone smoking in their presence.
Some people with MCS also have electrical sensitivities (EHS), though that is mostly among those with severe MCS.
A severe case could be shown as a minor and occasional appearance in a television series – after all the concepts have been well established so the stretch is not as large. Perhaps a more distant relative, such as an uncle. (Better choose a male for this, as they are more “believable” in our culture.)
The program should portray the characters as normal people who happen to get sick, just as it is in real life. They look like other people, they come from all social backgrounds, from all races and cultures. They have the same character flaws as everybody else. There is no specific “personality” who gets MCS. The only difference is that two-thirds are women, and mostly over thirty years of age. However, there are some professions that seem to produce more people with MCS, such as hairdressers, flight attendants, schoolteachers, and artists who work with toxic chemicals.
In past decades it was thought that it was mostly well-educated white women, but actual research found MCS in all races and classes. Another popular myth in the 1990s was that women with MCS had been abused as children. That was also disproven by science.
It is preferable to use characters who are respectable and can’t be accused of “wanting” to be sick. In film director Todd Haynes’ film Still Alice, the main character is a popular university professor who gets Alzheimer’s. Regretfully he chose a self-deflating, anxious suburban housewife in Safe. It would have worked much better with the professor getting MCS.
The homes of people with mid-level MCS look much like regular homes. The floors may be hardwood, old linoleum, or tile, rather than carpet and there may be an air purifier sitting in a corner. The furniture is either old (offgassed), or made of genuine materials (steel, glass, real wood). And little upholstering to gather dust and mold.
The cleaning products, laundry products and personal care products will be few in number and usually limited to what is sold in health food stores (sorry, few product placement opportunities here).
Pesticides are a big no-no at all levels of sensitivity.
Reading a newspaper may no longer be possible. They are more toxic than books. An electronic book reader (Kindle) may be preferred to printed materials.
People with mid-level MCS will not have aluminum foil on their walls or live in trailers or other unusual ways.
In both Northern Exposure and Safe, the person with MCS lived in a dome house of plastic. Plastic houses do NOT work. This writer has never heard of anyone with MCS who lived in a dome house, though they were an interesting visual in both those films.
People with MCS tend to look plain. Their clothes are mostly light in color, both because darker colors tend to be more toxic and also because the clothes must be washed several times to be tolerable (darker colors fade too fast). Natural materials are preferred, especially cotton, while silk is for the more affluent. Polyester causes itching for some people.
Mainstream makeup, hair dye, and hair spray are very toxic. There are some less-toxic alternatives, though most people with MCS use very little or nothing at all.
Many people also have food allergies, food intolerances, and other digestive problems. This means most are rather thin, though any body style is possible.
The start of illness
Many people get MCS from a big chemical exposure, which can easily be shown on film. It can be from moving into a “sick” or newly renovated office building. Or it can be renovations of the home or workplace with fresh paint and new carpet. It could also be an industrial accident, such as an overturned railroad tank car or fumes from a chemical factory (think Bhopal). There are many possibilities.
The majority of people with MCS have a slower onset with a less clear cause, but that is more difficult to show on film.
People tend to be in their thirties or forties when they get sick, though it can start at any age, including very young children. The majority are women.
Some get both MCS and EHS, but they do not start at the same time.
The spreading phenomenon
People in the early stages of MCS may just have trouble with one class of chemicals, such as pesticides or fragrances. Over time more chemicals tend to become a problem.
This is less of an issue for mild and mid-level MCS.
The majority of people with MCS have asthma. In some it is triggered by chemical fumes.
In Safe, Carol has an attack while attending a party. Viewers often believe it’s a panic attack, as the film is too subtle about the cause (in a later scene Carol tells a doctor she had asthma as a child).
People with MCS are not all affected by the same chemicals. It varies with the person, just as it does for people with allergies.
The most common problem is with fragrances, though fifteen percent of people with MCS report that they are fine with fragrances. A few – very few – even use fragrances themselves.
There are no universally tolerated laundry detergents. Among severe MCS cases, some don’t even tolerate baking soda.
This is rarely a problem for mid-level sensitivities, but among severe cases it can cause problems when socializing or sharing a household with another person who also has MCS.
Nearly every person who does not have MCS is surrounded by an invisible plume of chemical fumes from fragrances, skin lotions, makeup, laundry chemicals, and much else.
The person with MCS may stand a little further back to limit the effects, but only a little so it doesn’t get noticed or appear impolite. If outdoors, the person with MCS may slowly move upwind of the pungent person – ever so slowly, so it is not noticed. This “dance” could be fun, if the other person doesn’t stand still.
If a person goes into a store, their hair and clothes will pick up the particular smell of that store. This is typically not a problem for the mid-level sensitive.
For severe cases, even a spouse who has been shopping will have to shower and change clothes when returning home, as the fumes given off are enough to be a problem. This is hard to grasp for outsiders.
A way to display this phenomenon is that the person with severe MCS identifies the stores the spouse has been inside, just from the smell of the clothes and from six feet (two meters) away. A few people with MCS are actually that astute, though probably not with multiple stores.
Some stores are worse than others, especially hardware stores, tire stores, and stores selling a lot of plastic junk and perfumed items, such as “dollar stores.”
Lots of opportunity for drama here – from the spouse who has to stop using fragranced products to rebellious teenagers who want to experiment with fragrances and hair styling along with their peers.
MCS appears to run in families so the children may have some problems too, though usually mild at that age. The parents may want their children to limit their exposures to prevent later sickness, but often they rebel.
Family members who have to go fragrance-free, and who are not exposed to a lot when at work or school, often find their nose becomes more sensitive after some months. Their olfactory system reverts back to its natural pre-chemical lifestyle state. They may now find other people’s fragrances and other chemicals to smell offensively harsh and strong. The difference is that it does not make them sick, like it would someone with MCS.
People with mid-level MCS usually have some food intolerances and allergies. Once they discover that, they tend to try to eat healthier and experiment with what doesn’t give them stomach cramps and loose stool.
Gluten-free is a common approach, but any kind of food can cause problems. And gluten may not.
Many stay away from low-quality fast food, such as McDonalds.
The additives in food are a common problem. MSG is the one most talked about, but there are thousands of food additives in common use, and not always listed on the labels.
They may try to cook from scratch, using organic ingredients. They may ask in restaurants what is really in the food they serve. Some might go with faddish organic junk food or exotic fruits, etc.
Alcohol is commonly a problem. It can be the alcohol itself or the myriad additives in beer and wine. Some do well with beer from Germany, where an old law only allows four ingredients, so you are sure there are no additives.
The exasperated spouse might state that the food is “gluten-free, sugar-free, yeast-free, preservative-free, dye-free, MSG-free – and taste-free.”
Airing out anything new before it is taken into the house is daily life for people with severe MCS. This is called offgassing.
The less severe people typically only do that for particularly toxic items, if they are unavoidable.
The health care system
MCS is a controversial disease with deep divides among physicians. Real-life patient stories are a treasure trove of absurd encounters with some parts of the health care system, though acceptance is slowly growing.
People with environmental illness need the health care system for the same ailments regular people use it for.
Hospitals and clinics can be a minefield to enter with their fragranced sanitizers, cleaning agents, and carpets. The hospital food may be too loaded with sugar, food coloring and additives to be eaten. Then there are possible drug intolerances, food sensitivities and whether the hospital allows nutritional supplements. There are also roommates, their visitors and much else.
Throughout history, physicians have refused to admit they did not know enough. Instead, they write off patients as psychiatric cases when they do not understand. They’ve done that to gay people and people with ulcers, migraines, Parkinson’s, endometriosis, celiac, autoimmune diseases, and many more.
It is a dilemma for the patients whether to tell they have MCS or not. Bigoted physicians may then discount everything they say, whether related to MCS or not.
Nurses tend to be pragmatic and supportive of what keeps the patient comfortable. Some physicians go too far into medical politics, sheer arrogance and narrow-mindedness. The existence of MCS threatens much medical dogma and many doctors blame the victim.
In the 1990s the chemical industry and Big Tobacco ran a successful campaign to paint people with MCS as purely psychosomatic. They found a welcoming audience, including journalists and physicians. This campaign is documented in detail elsewhere on this website. Unfortunately, this false image still persists.
Physicians are generally revered in the media. However, many people with environmental illness have seen them as having the same shortcomings as everybody else. About 100,000 Americans are accidentally killed by doctors each year, yet they refuse to even keep statistics on it (Sutcliffe, 2019; Makary, 2016).
Read the book Unaccountable by Marty Makary for a highly credentialed insider’s candid depiction of their human flaws.
The television show Better Call Saul features several encounters with one arrogant, clueless and reckless hospital physician. Some of what she does to a man with electrical hypersensitivity is so irresponsible that real-life physicians are unlikely to actually do them, at least due to fear of lawsuits.
Friends and physicians will tend to tell the patient that she looks fine and downplay the symptoms. This is standard for all invisible diseases.
This can become absurd, where a friend repeatedly says, “but other than that, you are fine” to everything the sick person says (happened in real life).
For an account of a woman who has autoimmune and post-Lyme diseases, see O’Rourke’s book The Invisible Kingdom.
Since MCS is not officially accepted, there is basically no funding for research to treat it. There are many types of experimental treatments to try, but little science to support any of them. The people who suggest MCS is a mental illness tend to recommend psychological treatments, but there is little science to show those work – and some science showing such treatments to be harmful.
Patients navigate a jungle of alternative treatments, most of which is of very questionable value. But people can be desperate, and many try to see if they are one of the lucky ones who are helped.
The 2014 Oscar-winning film Dallas Buyers Club displays a similar dilemma for AIDS patients before effective treatments were available. A film like that about MCS must wait until it is accepted as a genuine illness. Imagine how Dallas Buyers Club would come across if it was released twenty-five years earlier when gay and transgendered people, and AIDS were looked at quite differently.
For a more thorough description of how the gay community did their own medical experiments and weird treatments, the book How to survive a plague by David French is both poignant, informative and entertaining.
The Netflix series Afflicted shows some of the EI treatment jungle, and it makes the patients look freaky.
This topic should be avoided. The world is not ready for it yet. A mainstream audience is used to doctors curing things with drugs and surgery. They cannot relate to the situation where the doctors have nothing to offer, unless they have been in that situation themselves. That goes double for screen writers and producers.
People with mid-level MCS are less likely to try a lot of alternative treatments than the severe cases, who are more desperate.
If you insist on covering treatments, make sure the audience really understands the reasons (Afflicted did not).
Virtually all people with MCS use supplements. They are rather cheap and easy to use, and each time a new one is tried, it is like a lottery ticket – maybe this one will be lucky.
There are a few products that are generally considered helpful for MCS, such as Vitamin C and NAC. But there are literally hundreds that could plausibly be helpful and it is easy to keep trying, spend a fortune and fill the kitchen with the little bottles.
There is no cure
There are some treatments that have helped people, but they do not help everyone. And some of these treatments encourage patients to tell themselves and everybody around them that they are now well. But very few who were severely ill are actually able to return to work.
Having a character be “healed” provides a disservice to the sick, as viewers think it is easy.
In the comedy Northern Exposure, the person with MCS is cured by love! That may be a little too silly.
The circle of ignorance
One absurdity is the circle of ignorance. MCS and the treatments some doctors use are all controversial because there is little or no science to back them up. At the same time, funding agencies and scientists won’t touch the subject precisely because it is controversial, and may impact their reputations.
Doctors basically expect MCS patients to wait patiently for science to come up with answers, rather than trying alternative treatments. But those doctors don’t support scientific inquiry into the subject matter as they claim “MCS doesn’t exist.”
The vast majority of people with MCS do not sue anyone. Lawsuits rarely succeed.
The industry is very keen to avoid setting legal precedents and apparently sometimes offer assistance to a company being sued. The standard defense is to claim the sick person is mentally ill and the supporting physicians are quacks.
They have seriously hurt people already devastated by illness when also yanking away their financial life raft.
It is only within the last decade that there have been some notable successes in court.
Some people with less-severe MCS keep it a secret to avoid stigma and harassment. Some consider it career-ending if their secret ever comes out.
There are no statistics on this, we just know from personal contacts, such as patients met at clinics. And one testimony made at a public hearing about EHS in Sweden.
There are often problems in the workplace from fragrances in the bathroom, the personal care products and laundry chemicals the co-workers wear and much else. Some co-workers may bring in scented candles, potpourri or other forms of air pollution. This commonly causes tension as people often feel that any request to tone it down is a big imposition (just like smokers in the 1970s).
Sometimes the conflict escalates into direct harassment and even physical attacks with these toxic devices. We know of one case where a group of co-workers actually ganged up on a man with MCS, with coordinated days where they all wore their strongest fragrances.
Management is often reluctant to step in and solve the problem.
It can be really tough and some people simply have to change jobs, or become self-employed, or under-employed. Or give up and apply for disability.
People with professional degrees tend to fare much better, as they have more power, especially if they are self-employed. We know doctors, pharmacists, dentists and lawyers who have been able to work their own practice. They tend to keep quiet about their disability to avoid the stigma. If a customer is too toxic to be around, they may be referred to a colleague.
Bathrooms are a particular problem for people with MCS. It is cheaper to fragrance them than ventilate them properly. Many people actually enjoy the smell of these toxic chemicals even though lots of them are labeled for use in well-ventilated areas only.
There are possible fun scenarios with the person with MCS trying to sabotage or remove the dispenser. Perhaps management then accepts that one bathroom is kept unscented, but the janitor keeps restocking it. Perhaps even a bizarre setup where the only safe bathroom is in a distant building (similar to the “colored only” bathroom in Hidden Figures).
If someone attacks with a fragrance or pesticide sprayer, that is not seen as violence in the eyes of the police. If the victim defends himself by hitting the attacker, guess who the police will arrest.
A person with medium MCS does not need to wear a mask in a grocery store, but will need to avoid walking through the detergent aisle. She may tend to go at times when there are few people, to avoid the “stinkers.”
Some situations can be lining up at the cashier, and then a pungent person lines up behind. Then she may have to abandon her place in line, while acting like she just forgot some item (to avoid causing a scene, or endure and get sick).
Another situation is to go through an aisle, but it is blocked by a stinker who doesn’t move. The solution is to back up, go down the next aisle to get around. But of course, now the stinker moved to stand next to the item that is needed!
The perfume counters at department stores and airports must be avoided, or hurried past. There have been incidents where overly zealous salespeople sprayed their toxic wares on unsuspecting people passing by. A few stores are too heavily fragranced to even enter.
Passing as normal
People with MCS get affected going out in public places with crowds, such as concerts, theaters and sports events. Occasionally they may decide it is worth it to get a “hangover” in order to attend an event. Or it could be just acting out and do something without a plan when the social restrictions become too much one day.
Some use alcohol, caffeine, sugar, chocolate or other stimulants to pull it off, even though there may be consequences later on. It can be liberating to act like a normal person for a day, or just a few hours, despite the cost the next day.
This issue is extremely hard for able–bodied people to comprehend, as they have little frame of reference. Remember, they are human too. Just like the many people who got fed up with Covid-19 restrictions and refused social distancing and wearing a mask.
Some friends will pull back. Others may have to be met at outdoor cafes, restaurants, and patios if they smell too bad. (Imagine doing that with coats on in cold weather.) A person with mid-level MCS will be fine inside with most lightly-scented people.
People who have the illness do not cease to be a normal person. Many want romantic relationships, but that is even more complicated than it is for regular folks.
The dating ritual demands that people look their best. But that often involves new clothes, stylish hair and makeup. How to arrange a date without getting sick from all that – and not scare away the date? The possible scenarios are endless.
One book about living with severe MCS (Gibson, 2006) shows an imaginary personal ad for comic effect:
Woman with chronic illness, who cannot go to restaurants, theaters, movies, parties, or any public building that has been sprayed for insects or where others are wearing fragrance, is seeking potential dating partner who does not smell for chemical-free outings and to share boring food. Sex for me is a thing of the past, and I’m often in pain. I can’t use makeup or get my hair done, but I’m beautiful on the inside.
This is too extreme for mid-level MCS, but could be used for comic effect.
Among the severe cases of MCS, dating is pretty much limited to other people with MCS. With two-thirds being women, that means the guys are in hot demand. Instead of owning a hot car, here owning a healthy house is the big “women magnet.”
Have a baby?
Having a baby is a big decision for anybody. It is even bigger with MCS.
MCS appears to have a genetic component. Will the bad genes be passed on to the baby?
The health care system is often unable and unwilling to accommodate MCS. Pregnancy, birth and child care require many doctor visits.
Should the baby be delivered at home with a midwife instead? How to find a non-toxic one? How to find understanding health providers so the mother’s needs are met?
Most baby care products are very toxic, including disposable diapers.
Many people with MCS simply choose not to have a baby. Or they may have had children before the onset of the illness, which rarely starts before the age of 30.
You cannot trust a “normie”
People with MCS learn the hard way that they cannot fully trust someone who doesn’t have the illness to keep them safe.
In practice, it is difficult for someone who doesn’t have the need to keep the right mindset of safety. So they forget. Again and again.
With the impaired sense of smell most normies have, as they inhale chemicals 24/7, they simply can’t detect much themselves.
And it is so easy to rationalize a problem away (“it’s only a little bit”).
This is virtually impossible for outsiders to comprehend. To them it can look like OCD or anxiety.
“If he doesn’t know…”
A common situation is for the EI to be invited to some gathering, say a dinner in a private home. She is assured everything will be fine there, after the issue is brought up. Except they just painted the place a few weeks before, but they rationalize “if we don’t tell her, she’ll be fine.”
Shortly after arriving she becomes brain foggy, etc., but doesn’t want to create a scene and struggles through. Eating usually helps for a little while. She leaves as soon as is socially acceptable.
The hosts feel vindicated that it was all in her head. “See, she didn’t complain.”
Done right, this common situation can be both educational and funny.
Travel to family get-togethers
Going to a family gathering, such as the American Thanksgiving, is complicated. There can be negotiations and preparations for a bedroom that will be free of fragrances and toxic laundry, such as bed sheets (bring your own). Hotels are dicey.
Then trying to get people to tone down their fragrances. Or if it is a warm climate, have the event outdoors. Some teenager at the table may rebel against the ban on toxics – even some idiot adult might, rationalizing the act with “it’s just a little bit” or “nobody tells me what to do.”
Travel can also be complicated if it is long distance. People with mid-level MCS would not need to use a respirator onboard an airplane. They will just tough it out.
Many consumer items are marked with health warnings required by the state of California. Does that mean they are safe in other states?
People with MCS are often very concerned about preserving nature in general, recycling, etc. Yet they may drink bottled water, shipped long distance.
Suicide is a problem among people with severe MCS (not those with milder cases). In most cases it is not due to mental illness, but is a rational decision when life simple becomes unlivable.
Homelessness (actual or imminent), rapidly declining health and running out of savings appear to be common causes of suicide.
People with MCS are often excluded from many social safety nets, such as family help, government assistance, and homeless shelters.
Don’t leave the audience guessing
It is important to bring the audience along, so they understand what is happening. Our analysis of social media and other reviews show that when the audience is guessing, they very often guess wrong, and in a sinister way. That seems to be human nature, but it is unfair to those stereotyped.
An example was the asthma attack scene in Safe, which some reviewers thought was a panic attack. The film was much too subtle here, by then showing a scene where she tells a doctor she had asthma as a child. It needs to be more explicit. But maybe Todd Haynes intentionally made it vague?
Asthma attack scene from "Safe," which some viewers interpreted as a panic attack.
Showing the invisible
MCS is an invisible disability. People usually don’t look sick, which is one reason it is controversial.
In Safe they used several good visual cues for severe MCS, such as an asthma attack, coughing, insomnia, and people wearing face masks. More unrealistic cues were an ambulance ride, nose bleeds and facial lesions.
Brain fog is the most distinctive symptom of MCS. It feels like having the flu (without a fever) and not having slept all night. It can sometimes be as if the world is on the other side of a somewhat dirty window. The eyes are often a little blurry, out of focus. Apparently, no film has tried to show brain fog.
The symptoms are usually not constant, but come on from exposures and then wane once back in fresh air. People with mid-level MCS can easily have several days with no symptoms, especially when they learn to avoid the triggers.
Somehow showing the chemical plume around most people could be an interesting visual.
The absolute no-no’s
There are some things that can happen to people with environmental illness in real life, but should never be shown on television.
Chiefly among them is “the test,” where someone exposes the patient to see what happens. This is in the category of “don’t do this at home” and should not be shown at all. It is irresponsible to encourage people to do that.
That would be like showing someone slipping a peanut into the food of someone wildly allergic to peanuts, just to see what happens.
Unfortunately, the TV series Better Call Saul does it twice to someone with electrical hypersensitivity (EHS). The first time it is done by an irresponsible doctor in a hospital. Both “tests” were totally flawed anyway, but the script writers obviously didn’t know enough to see that.
Doing such a “provocation test” so that it is scientifically valid is actually very difficult. Several scientists have failed at doing them right (which they rarely admit to).
Another no-no is to show major emotional distress. Having any life-altering illness often causes distress, whether it is cancer, loss of a limb, disfigurement, Alzheimer’s, or many other illnesses. The result can be depression or anxiety.
When film characters have illnesses and disabilities, the emotional effects are rarely shown. They are not in Wonder or Still Alice. So why should they for environmental illness? Since many people falsely believe MCS is “all in their head” it is unfair to reinforce such false beliefs, just as racist stereotypes are no longer shown on film.
And free us from any sort of “superpower” bestowed upon the environmentally ill. They do not have psychic powers or special super senses. They often have a more acute sense of smell, but that is just because ordinary people’s sense is deadened by the chemicals they breathe in 24/7.
Please avoid overused and misleading clichés, such as “allergic to life” and calling them “the sensitives.”
MCS is not an allergy. Allergies have a specific medical definition and MCS is not included.
Referring to MCS as an “allergy” or a “sensitivity” trivializes the true impact. Most people think of allergies as a minor inconvenience that is handled with a pill. MCS can completely uproot someone’s life.
A “sensitive” person is a wimp. It takes courage to go out in a toxic world with MCS. They are not wimps.
When the authorities do not provide answers, or are seen as unreliable sources of information, people make up their own theories. This can include medical treatments and much else.
These ideas are often promoted by people who speak with great self-confidence that they really know what they are talking about. Social media are great conduits.
When people are scared and uncertain, they are easier to convince.
This was seen during the AIDS epidemic, and when the Chernobyl nuclear power plant blew up in the Soviet Union. More recently, it was on full display during the Covid-19 epidemic.
This writer has lived in rural America for two decades. Here regular healthy people commonly believe in things like wonder fuels that can double a car’s mileage, perpetual motion machines that produce free electricity and much else. All supposedly suppressed by the government.
Since doctors and agencies have little constructive information to offer, it is no surprise that wacky ideas flourish in parts of the MCS community, especially on social media. Dissenters have long learned it is best not to contradict them, but silence does not mean approval.
This is very unfortunate, as outsiders may attribute this to the sick people in general, as was done in two recent books written by carpet-bagging journalists. (They didn’t talk about perpetual motion machines and other such beliefs.)
It is essential that the screenwriters are well informed about how people with the illness actually live and cope. That is not something that can be learned through a few interviews and cruising some websites. The standard sage advice, “write what you know” applies here too. If you don’t live with the illness yourself, you really don’t know.
The author of the novel Snowflake, AZ visited that MCS community, but he still made several mistakes in his story, despite good intentions. He had his characters have a bonfire, drink alcohol and use kerosene lanterns, which are all usually problematic for most people with severe MCS.
Worse, the journalist Oliver Broudy drove around Arizona for six days and then lurked around some social media sites before he wrote the shallow book The Sensitives, which is NOT where anyone should go for source materials.
Most books, articles and television focus on the most severely ill people. There is little material about the less “spectacular” and much more common mid-level and mild cases.
A good source is the book Living with multiple chemical sensitivity by Gail McCormick, which features many mid-level cases. Some of the books by Alison Johnson are also suitable.
This website (EI wellspring) has science-based information about the illnesses and articles about how to cope with them (see link at bottom). Keep in mind that our focus is helping the severe cases; much of the material is not needed by the milder cases.
If the screenwriter doesn’t live with the illness, it will take a real effort to get beyond the misleading stereotypes, just as for other minorities. Close cooperation with multiple consultants who themselves have the illness is essential. There is no responsible alternative.
Many physicians have strong dismissive views on people with MCS. Unless they specialize in helping people with the illness, they tend to have a distorted perception – especially if they are psychiatrists.
Psychiatrists usually see people with MCS in high-stress situations, which are not a good way to learn about them. Such situations include evaluation for disability, where a failure of approval would be catastrophic (a life in abject poverty). Or they seek psychiatric help for dealing with the trauma caused by the consequences of the illness.
Most have only seen MCS patients for a few office visits. How much would they learn from that? Especially since American doctors tend to be poor listeners.
Also keep in mind that in the early 1970s, about 90% of psychiatrists believed being gay was a psychiatric illness. They too only saw stressed-out people in their practice and believed that was the norm.
If you do seek the advice of a physician, ask how many cases he/she has actually seen, how many actually treated, for what reason, and for how many office visits.
Visiting people with MCS
Todd Haynes visited people with MCS in Los Angeles and Texas before he made Safe. He learned a lot; most details in the first half of the film are authentic.
Beware of the mistakes so many journalists have made when visiting. They tend to be very judgmental and jump to conclusions.
They tend to expect the sick people to be paragons, while not holding their critics to the same impossible standard. They also do not understand that some people with MCS – especially severe MCS – may be traumatized by the experience, which can affect their behavior.
They also sometimes notice what they see as “inconsistencies” in how people with MCS live. These usually have very reasonable explanations, which are not apparent to an outsider. ASK instead of assuming your interpretation is correct.
Just because someone is sick with MCS doesn’t mean they are experts in how it works. Most just know how it affects them, and that varies with the person.
Many people with these illnesses are not willing to participate, since journalists often make people with these illnesses look like freaks. Some media contacts dishonestly claimed they were “different” and would portray the sick people with “compassion” but certainly didn’t. It will be hard to overcome these abuses and gain people’s trust.
For science-based information about MCS, go to www.eiwellspring.org/intromenu.html.
For detailed reviews of television and films featuring people with MCS or EHS, go to: www.eiwellspring.org/filmreviews.html.
For a discussion of the harm caused by the film industry’s biased and mean portrayal of MCS and EHS, go to www.eiwellspring.org/media.html.
Berg, Nikolaj et al. Prevalence of self-reported symptoms and consequences related to inhalation of airborne chemicals in a Danish general population, Int Archives of Occupational Environmental Health, 2008.
Gibson, Pamela. Multiple Chemical Sensitivity: A Survival Guide, Churchville, VA: Earthrive Books, 2006.
Kreutzer, Richard et al. Prevalence of people reporting sensitivities to chemicals in a population-based survey, American Journal of Epidemiology, July 1999.
Makary, Martin and Michael Daniel. Medical error – the third leading cause of death in the U.S., BMJ, May 2016.
Makary, Martin. Unaccountable, New York: Bloomsbury, 2012.
McCormick, Gail. Living with Multiple Chemical Sensitivity, Jefferson, NC: McFarland & Company, 2001.
O’Rourke, Meghan. The Invisible Kingdom: Reimagining Chronic Illness, New York: Riverhead Books, 2022.
Sutcliffe, Kathleen. How to reduce medical errors, Time, November 25, 2019.