Karen checking to see if the fragrances in her van have subsided after a mechanic worked on it. All images from The Sensitives © Drew Xanthopoulos.

The Mysterious, Maddening World of Multiple Chemical Sensitivity

A documentary about people who’ve fallen sick to an illness doctors can’t even agree exists

What would you do if you developed debilitating symptoms that doctors told you were made up, and that your real, physical suffering was all in your mind? Welcome to the frustrating world of Multiple Chemical Sensitivity (MCS), a mysterious illness originally thought to be a figment of the sufferer’s imagination. Drew Xanthopoulos is delving into this world with a feature-length documentary The Sensitives, currently in post-production.

Historically dismissed by the medical community as a mental disorder, MCS sufferers become sick from exposure to ordinary amounts of pollution, cleaning products, pesticides, and even wireless technologies. Symptoms include weeks-long migraines, loss of motor skills, and a lack of ability to function normally in the world. Many of them are unable to work. They live in isolation.

For some, desert climates bring relief and refuge. Most of them sequester themselves by default, staying in their own irritant-free environment, effectively quarantined from others’ chemicals and fragrances. When people suffering MCS do go out, they have to protect themselves from what they come into contact with, often wearing breathing masks for protection.

Because some of the subjects have not allowed outsiders into their homes or vehicles before for fear of contamination, The Sensitives is shot mostly through windows and screens. Out of necessity was born an aesthetic.

Sam looking out his window to talk.

Xanthopoulos wore specially prepared clothes given to him by subjects after being asked to shower in their homes with prescribed soaps. Often, he was required to use a long lens to keep a safe distance.

MCS has gained some traction, at least culturally, due in part to the growing popularity of non-GMO food, organics, and BPA-free plastics over the past 15 or so years. The knowledge that what surrounds us does in fact affect and infect us is no longer considered “crazy.” This in turn is beginning to mean that MCS is no longer automatically dismissed as an imagined condition, though it remains far from being understood.

Xanthopoulos is running a Kickstarter until July 15 to fund the completion of the film. Here he takes the time to explain his motives, his discoveries and if he’s any closer to knowing what causes MCS.

Q & A

Alyssa Coppelman (AC): What is Multiple Chemical Sensitivity?

Drew Xanthopoulos (DX): MCS can manifest in different ways for different people. Some report migraines for weeks, drop foot or stilted movement and speech, rashes, blood in stool, chronic fatigue, and loss of memory/cognitive skills.

What they all have in common is the belief that their symptoms are the result of ordinary (and sometimes excessive) amounts of toxins in the environment — the synthetic compounds in everyday cleaning products, pesticides, and pollution. Essentially, the byproducts of modern industry since WWII. There is no “patient zero” that I’m aware of but the condition began entering popular media in the 1970s.

Historically, the medical community has typically dismissed it as a mental disorder but even when speaking with the staunchest skeptics, they all admit that the underlying causes of it are unknown. It’s a really tough condition to put in any one box. Psychiatrists I’ve spoken with say it doesn’t quite fit any one profile neatly and toxicologists find it a mystery how trace amounts of chemicals can be so devastating to a small percentage of people when so many people are exposed to more and are okay.

“Smells kinda bland,” Joe jokes to make his wife smile.

AC: How do you come down with this condition?

DX: The most interesting explanation I’ve heard from researchers is that this condition is one of several that are difficult to diagnose and generally misunderstood. This includes fibromyalgia, Lyme disease, Chronic Fatigue Syndrome, and others. Their idea is that MCS and others require a paradigm shift for illness, similar to how the discovery of bacteria caused a paradigm shift in the 19th century — that since they don’t fit into any of our current boxes very neatly, we need to create a new one.

There are a lot of different treatments and methods out there but none are universally agreed upon as being a silver bullet for all. The only agreed-upon treatment I’m aware of is getting the things that seem to make you sick away from you.

Sam laying out for some rare vitamin D.

AC: After first learning about MCS from photographer Thilde Jensen’s project, The Canaries, how and when did you decide to make a film?

DX: It took over a year of research to finally admit to myself I was going to make a film. It’s a really tough topic to wrap your head around when there are so few, if any, experts on the topic so it’s a lot of time hearing everyone’s individual stories and trying to make sense of something even they admit doesn’t always make sense!

I also wanted to be sure I could tell stories that were relatable to a public audience and that was difficult to find because so many I’d met had left their former lives decades ago to find relief living remotely in the desert. I needed to find someone who’d come down with it recently and still had a life resembling our own. It took a year-and-a-half to find him and another eight months to be invited by his family to visit and shoot.

Joe in his “safe” room within his suburban Kansas home.

AC: How did you made inroads into this community?

DX: Thilde Jensen made all the initial introductions that eventually led to more. I couldn’t have done this without her blessing because these people are so used to outsiders showing up with cameras and the intent of making a “This could happen to you!” sensational piece or a “Look at these weirdos!” cable evening news segment. So, being able to call people and begin with, “Our mutual friend Thilde said we should talk…” allowed me in the door. After that, it was a matter of showing up and listening to their stories without judging.

AC: Where is this community and how large is it? Is the community made up strictly of sufferers from this condition?

DX: There is no one community. It’s more of a spread out network of people all over the world. The people I document in the film live in various parts of Arizona and Kansas. One of the subjects, Susie, lives in a kind of “neighborhood” of people with MCS and Electrical Hypersensitivity in Arizona and that might be the closest thing to a community, but they shy away from that term. I think there are maybe two dozen MCS homes there and lots of people come and try it out, hoping for relief. But for most, it doesn’t help.

Sam and Nathan during a rare scouting trip for cleaner air.

AC: MCS sufferers seek out certain environments?

DX: It’s true, a lot of people with MCS are drawn to the desert for two main reasons: it’s dry so mold doesn’t easily grow there, and it has some of the cleanest air in the country, largely because of the weather and lack of people. Tuberculosis patients went to the same places because of the air quality. But it isn’t the best for everyone and many would rather stay near their family in a less perfect place than all alone in the desert. This is the major decision our main character from Kansas faces in the film: an uncertain, unhealthy future with his family or the lure of an isolated, “safe” community built for “sensitives” like him.

AC: Are many able to live with others— family members, spouses, etc.?

DX: No, and this is the worst part of this condition. For most, their families and spouses leave them or drop them off somewhere to be forgotten. It’s a very alienating illness because there’s no official label for it and the symptoms aren’t always logical and predictable so a lot of families and spouses feel helpless, overwhelmed and they tragically split up.

Susie in Arizona.

AC: Was it difficult to gain trust and get people to open up on camera?

DX: Most people were very generous with sharing their stories. The unusual concern for many was that by participating in a film they risked their insurance or health benefits being taken from them. They feared their images could be scrutinized later for showing any moments when they’re not completely incapacitated and therefore being just fine.

AC: How many people with MCS appear in your film?

DX: The film documents two families and an activist dealing with this condition. For the family in Kansas, it’s the father who comes down with it. In Arizona, it’s two adult twins and their mother who are all impaired. So including the activist, it’s five people who have it. Their stories are told through the voices of the caretakers though, through the Kansas man’s wife and the twins’ 96-year-old grandmother. The activist in Arizona acts as a caretaker herself for the larger MCS community which she councils over the phone everyday.

Joe in his “safe” room within his suburban Kansas home.

AC: What is the purpose of aluminum foil in the foil-lined room and in the van? Do those both belong to the same person?

DX: It’s a cheap, sterile surface, free of any synthetic chemicals so it’s used to seal things that might be off-gassing something that’s bothering them. All the subjects use it to some degree but the van belongs to the twins and their mom while the room is for a different person living in Kansas.

AC: Did anyone describe to you the symptoms of being affected by WiFi?

DX: Yes, WiFi causes similar symptoms as with chemicals like migraines and drop foot (neurological impairment of a limb, commonly an arm or leg) but a milder symptom is a tingling feeling in their joints and extremities. With the folks I’ve documented, who are the outliers as far as how much one can be affected by chemicals and wireless technologies, it’s hard even for them to know where one cause and effect ends and the other begins. It’s a wilderness they’re navigating by themselves, essentially.

Scouting vehicle prep.

AC: Are any of the MCS sufferers you encountered able to work? If not, how do they manage to subsist?

DX: Some are able to work but for those completely incapacitated, they survive off of pensions and social security if they’re old enough, or Medicaid. There have been a few statistical studies done that found that over 15% of Americans identify with some degree of sensitivities significant enough to be noticeable. That’s like someone changing offices because the new paint or carpet gives them headaches or not being able to wear or be around strong perfumes for the same reason, but otherwise are fine most of the time. They then found that about 1% identify with something like what the subjects in The Sensitives are going through. A severe down-spiraling of symptoms set off by exposures that built up over a lifetime and finally pushed them over a tipping point.

Susie in Washington, D.C.

AC: While working on the film over the past three years, have you witnessed anyone’s decline or, more happily, recovery?

DX: I have witnessed both and heard many stories of both but we’ll have to wait for the film to be completed for more details. The main plot is about how a family faces an uncertain future with their loved one suddenly coming down with MCS. I wouldn’t want to spoil their story.

AC: What was that like to have to film through screen doors and windows? How often did this happen?

DX: At first, it was frustrating and I wondered if it was a deal-breaker. But those parameters eventually led to improvising different methods of shooting and a unique look that perfectly expresses some of the stories, I think. I only had to shoot through windows and screens for the twins and their mom, who haven’t let anyone into their home for over 5 years. For everyone else, it was a matter of keeping a distance most of the time or limiting the amount of time the camera was on.

Nathan in a rare moment, playing music.

AC: Did you shoot everything by yourself or did you ever work with a crew?

DX: Because of how vulnerable everyone was and how restricted I was with what I could wear and clean myself with, it had to be shot alone. But I think it lent itself to much more intimate material than could have been had with a crew.

AC: How did you record sound from outside?

DX: Sometimes I was allowed to place another sound recorder on the inside…wrapped in a plastic bag though so it wasn’t that useful. Mostly it was a great on-camera mic and the fact that the desert is a giant sound stage that helped accomplish good sound.

Sam in a rare moment outside.

AC: How has The Sensitives changed your perspective?

DX: One of the takeaways for me has been you never know what’s going on inside of someone. If there’s no crutch or bandage to clue you in to why someone acts differently, they could be wrestling with something unimaginable on the inside. It’s just made me more empathetic in general, which is a good sign I’ve done my job as a filmmaker!

AC: Did you interview or otherwise involve any doctors or researchers who study MCS?

DX: Yes, I spoke with as many scholars as I could find who’d studied it, as well as some specializing in unknown illnesses in general. That aspect will be incorporated into the film through dialogues one of the subjects has with several doctors and researchers to get a better handle on what is known and unknown.

AC: You’ve been working on this film for three years. How many trips have you made during that time?

DX: I believe I’ve made over 30 trips lasting between as long as a long weekend and 3 weeks at a time.

Susie en route to speak at National Council on Disability conference in Washington, D.C.

AC: How many locations have you shot in, and have you completed filming?

DX: I’ve shot in New York, Arizona, New Mexico, Kansas, Texas, and Washington, D.C. With the exception of one or two more days of shooting some of the dialogues with researchers, principal photography is complete.

AC: What is your background related to filmmaking?

DX: I studied Anthropology in college and worked in the Bay Area with filmmakers like Les Blank, Maureen Gosling, Emiko Omori, and Jed Riffe. They were the best mentors I could ask for. So pure and righteous about filmmaking, it was infectious and gave me the solid principles to grow from.

After that I wanted to explore more in a grad program, so I applied to a bunch and ended up choosing UT Austin’s film program because it was one of the few then that blended doc and fiction. After UT, I was fortunate to work with the best in Austin on amazing projects that took me all over the world and develop the skills I needed to make The Sensitives.

Sam and Nathan in their cinderblock home in Arizona.

AC: Why did you choose to have the caretakers tell their individual stories?

DX: They are the closest to the audience, perspective-wise. It’s the double-edged sword of this topic: because this condition is so different and unusual, it draws people in but for those same reasons it can be hard to relate to someone with it. Also, those perspectives are so often overlooked even though their journeys can be just as tough. Without their voices, these stories would be incomplete.

Contribute to the Kickstarter for The Sensitives until July 15, 2015.

The Sensitives - a feature documentary
Drew Xanthopoulos is raising funds for The Sensitives - a feature documentary on Kickstarter! Families struggle to…www.kickstarter.com

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