There’s a certain feeling of disappointment when you knowingly choose to keep your cell phone, doubling as your alarm clock, near your face when settling in for an evening’s sleep. Having been warned of radiofrequency waves’ ability to cause cancer, keeping an electronic device that close to your brain for hours on end is not, we’re told, a wise decision to make. There are so many electric and synthetic materials in today’s everyday devices that to avoid them all would be to effectively remove yourself from modern society. You accept the potentially harmful results in order to live and work amongst your peers.

Drew Xanthopoulos’ documentary The Sensitives follows three sets of people who deal with potentially life-threatening reactions to everyday elements — electrical, chemical, fragrant, or other. Because of their disability, their lives are effectively turned upside down as they go to strenuous, frustratingly restrictive lengths to cut themselves off from their triggers: a woman with chemical sensibilities relocates to the deserted, open landscape of Snowflake, Arizona; a mother and her two sons stay confined to their home, relying on food and water provided by their elderly grandmother who drives into town to provide goods keeping them alive; a family man in suburban Kansas City keeps himself isolated in an upstairs tinfoil-covered attic away from electrical currents. Each day is a constant struggle to either fight against the symptoms that dare identify them as outsiders or be confined by them and live as social pariahs. All throughout, Xanthopoulos makes it clear that The Sensitives is less about the uniqueness of their predicament than it is about how they attempt to get through them with the help of others.

As the film premieres at the Tribeca Film Festival, I spoke with Xanthopoulos about the precautions he took in filming his subjects, his use of sound in hyper-intensified circumstances, and how he made sure to give as much attention to the sensitives as he did their caregivers.

Filmmaker: Given the anonymity with which some of your subjects in The Sensitives go about their daily lives, how did you find your three sets of characters? Had you been doing research into these kinds of sensitivities before meeting them?

Xanthopoulos: I first became aware of these sensitivities about five years ago through Thilde Jensen’s photo essay in The New York Times. At the time, she’d been working on a book version of the essay that looked at people living all over the country with this condition. I contacted her, asked a lot of questions, and was invited to come on a shoot that she was doing near Dallas, Texas. She was the person who introduced me to these people, and because she was already photographing them, it turned out to be a perfect collaboration. The subjects were used to a camera and of a person documenting their lives [through a camera], so she had already done a lot of the trailblazing for me. It was about a year-and-a-half of meeting people all over the place, from upstate New York to the depths of Arizona in the desert.

Filmmaker: So they were already familiar with being photographed, but were there any precautions you had to accept in order to be on location with them?

Xanthopoulos: Yes. I had a special pair of clothes that I prepared according to instructions they gave me beforehand, involving boiling my clothes in filtered water a few times and letting them soak in baking soda and water. I would then air-dry everything, because if I had used a washing machine or dryer, there would be traces of detergent or fragrances that might bother them. I would keep my clothes in a sealed bag, and leading up to shooting I would use fragrance-free hygiene products like fragrance-free shampoos and soap. And in terms of the equipment, it was really challenging. I wasn’t allowed to use any wireless microphones, which is pretty unusual for modern day filmmaking and is a pretty important piece. All of the sounds were gathered from an onboard microphone, a boom mic on the camera itself, and that determined a lot of the ways I could shoot.

I had to keep a distance from them with my camera, attempting to minimize how my presence affected their health. I was asked to turn off the camera a lot of times when it was becoming bothersome to certain subjects, for example. These precautions also played a huge factor in the way the film looks. Most of it was shot on a longer lens, which gives it a particular feel. Normally you can get closer to people when you’re filming them, but that wasn’t the case here.

Filmmaker: Was it important to you, with the inclusion of the sweet, endearing grandmother who delivers goods to her secluded family in an attempt to make sure they’re okay and surviving, to show a life outside of this condition? We’re so in touch with the three storylines the film provides that to see it from the point-of-view of someone who serves as a bridge between the condition and the “healthier” lifestyle is quite a contrast.

Xanthopoulos: Absolutely. I think the documentary takes the perspective of the caregivers as much as it does the people who are ill themselves, and that was a very important choice we made. Like you said, they serve as a bridge to the audience. This is a very challenging topic and these are the most extreme cases of this kind of illness. The way they’re living is really remote and strange to the average audience, and so to have somebody who’s not sick but is very much immersed in this world was really important for the film to work for the average audience member. That was a big part in choosing who I eventually started following, tapping in to things that were very relatable about them. Many of the conversations we had weren’t about illness, but were about music, or baseball, or traveling. To me, that was a really important barometer in them being relatable in the film.

Filmmaker: You mentioned baseball, and I’m reminded of that edit involving 1990s home video footage of Joe participating in his daughter’s baseball game. You cut that with present day footage of him in his isolated, tinfoil-covered attic watching his family play baseball in the yard. He wants to join them like he did in the old days, but now he’s confined to his room. How did you decide when to incorporate this preexisting footage?

Xanthopoulos: Ironically, Joe was the one in the family who most often avoided home video cameras [back in the day]. For some reason, he just hated being in front of them, and so there was very little old footage of Joe on camera. We found a few morsels, however, and they ended up being gems. Just to see him filled out and smiling and healthy…Most importantly, the purpose of that footage was to show you why he cares so much about getting better. He’s immersed within family in every single frame of that footage. He has kids on his lap, family swirling all around him, and he’s a family man through-and-through. One of Joe’s first scenes in my film features him lamenting having to wear a mask in front of his granddaughters because he doesn’t want them to remember him like that. The home video stuff hopefully puts in perspective who this man was in relation to his family, the rock that he was for everyone, to juxtapose how he’s now locked in a room and unable to participate in life.

Susie was on the other end of the spectrum. She once lived in San Francisco, went to graduate school there, and now lives in the desert alone. The old footage of Susie we use juxtaposes how worse off she used to be, physically too. You really see her body breakdown in that footage in a stunning way. It gives some perspective as to the health she’s gained living in the desert since then.

Filmmaker: What’s also interesting about watching Susie at her home at the beginning of the film is that we really see her as a confident and hardworking person. And then when she travels across the country to attend the medical conference for people with disabilities, we observe how she interacts within an environment that’s she not as familiar or comfortable with. Did you do anything particular with the sound design for this sequence? We see so many of the frustrations and precautions that Susie has to take that we become much more sensitive to the sounds of the airplane engine and the subway and things of that nature that sound amplified. I don’t know if that was in my own head or if there was anything you did with the sound design to help bring that to the forefront.

Xanthopoulos: Maybe both hopefully! The sounds are normally turned down in a film and our realities become our perception. We didn’t add any artificial sounds in the film and the sounds of the airplane and subway were all already there. The musical score also helped convey Susie’s point-of-view during those scenes and that was the most important thing for me. There’s no real dialogue in that sequence, and it’s all about Susie suddenly being a fish-out-of-water. Watching someone (who up until that point seemed very recovered) start to break down again was startling for me to witness. As someone who was filming those moments, I was so aware of everything around her, like the boom of the plane engine and all of the cacophony that comes with traveling in general. There are were all of these overhead announcements taking place and subway cars screeching to a halt and echoing all around her. We really wanted to communicate her point-of-view and how all of those elements feel. She feels it much more so than the average person and the sound design was trying to convey that. We didn’t add anything artificial to it but we made sure to highlight each of those sounds and put them at the forefront of the experience.

Filmmaker: I felt an increasing amount of claustrophobic, tight close-ups on Susie’s face when she goes to attend the conference for people with disabilities. We’re much more in tune with everything around her, her movements, her expressions, and how her body’s changing. You mentioned using a long lens for the film, but did that affect how you shot her in this public environment?

Xanthopoulos: Well, for most of the film I used a long lens due to having to keep a distance [from the subjects]. Regarding that sequence though, I knew that the drama was all in the reaction of the person we were shooting, and it would be much less interesting for me to be shooting the things that she’s looking at [rather than shooting her looking at them]. Susie is so naturally expressive and her face was really saying it all. I was betting on the sound design to communicate what she was reacting to. Every day millions of people travel in the same system as Susie does and have no problem with it whatsoever. Although it’s not a scary thing for them, it is for Susie, and the best communicator for that was her face.

Filmmaker: The film’s visual identity is really unique too, as we can go from a shot of a closed-off suburban home where Joe lives to these wide-open desert vistas that feel like they’ve been taken out of a Western. How did you depict a distinct sense of place that was quite different depending on what story we’re in at the time?

Xanthopoulos: Joe’s world in Kansas, and even later in Texas, is the most claustrophobic in the film, as ninety percent of what I shot with him took place indoors. Susie is outside a lot, and the Akers family are stuck in this large, wide landscape. For me, the relationship of the outside world to the refuges these people have created for themselves was really important to me. I wanted the desert to feel serene and serve as a relief, a place of respite. In contrast to that, the outside world is really scary, loud, chaotic and tight when Susie gets to D.C. for the conference. That was a choice, as a cinematographer, to feature those interiors and exteriors very differently. It was also a product of the experience of trying to chase after Susie as she was experiencing this really intense traveling situation. I was terrified that she would collapse, that she would push herself beyond her limits.

I’m digressing a bit from your question, but I think this is interesting, the role I had of simultaneously being the documentarian and being Susie’s lifeline. It was really tricky to navigate, and the bottom line was: if anything got too crazy for her, my camera would go down immediately and I would be there to help her. At the same time, it was really important for me to document what that experience was like for her. I definitely had mixed feelings throughout her traveling, thinking both about her safety and about the importance of witnessing what she goes through.

Filmmaker: While the film doesn’t feature many instances of people with sensitivities interacting with people with sensitivities (especially with such unique symptoms like theirs), you do have that moment where Joe’s accused by someone with a similar sensitivity of possessing fragrances on his body. He gets offended and calls them a “concentration of crazies.” I believe it’s the only moment in the film where we see two strangers with a similar disability interacting with one another.

Xanthopoulos: That’s a really important moment in the film and a moment of self-awareness for Joe. It’s the beginning of him realizing what his family does for him and the burden they bear as caregivers. In that moment he’s suddenly confronted with someone whose sensitivities are different than his, who may be worse off than he is, and she’s asking something of him that he felt was too much at the time. He loses it for a second and then his wife talks him down from it. It’s an amazing moment of self-awareness. Up until that point, he was the only person who was sick, and then when confronted with another sick person, it’s like “oh wow.” That moment is about him realizing how much he asks of everyone else and how it’s not always easy to understand why he’s asking for it. Did you get that from that scene?

Filmmaker: Absolutely. The film is not about the question of whether or not this disorder is just in their minds or not, but I think it deals with that question very respectfully. But then we see that moment where there’s an argument of “well, your sensitivities are less valid than mine,” and that opens up the wild, wild west aspect of the illness. Without proper diagnosis, we can effortlessly claim less validity of one’s illness than another’s, you know?

Xanthopoulos: Yeah, that’s a big part of it, of people left to their own trial-and-errors of trying to feel better, to figure out what the source of their feeling so terrible and being validated by the larger medical community. I think you’re right that the film isn’t interested in the question of if it’s in their heads or not. I think that’s the wrong question to be asking. We have a long history of being confronted with an illness, and when we don’t know the cause of it, we blame the people who are sick. People who had multiple sclerosis were called hysterical women, people with PTSD were men with weak constitutions, people with AIDS were homosexuals. Today people often come across [the issue] of sensitivity and say that it’s in their head, that it’s mental. To me that’s just another way of blaming the people who are sick rather than trying to understand the mechanisms of why it’s happening to them. It’s a common reaction and I really hope this documentary plays a role in having a discussion as to why we react that way to illnesses we don’t understand.

Filmmaker: When I first heard about the film, I thought that maybe it represented an extreme case of OCD, but then you include information about Joe’s very real physical reaction to his illness, and that provides more context and validity. How did you work with the National Council on Independent Living? Did you consult with them?

Xanthopoulos: That was all through Susie. I made contact with them when I found out that Susie was going to their conference to advocate for them to include people with chemical and electrical sensitivities in their literature. In contrast to the very isolated places I had been shooting at up to this point, this was the first time I was filming in a very public space. I asked if they would be okay with my filming at the conference, and they were extremely supportive of me being there. They were very accommodating and I ended up meeting a lot of incredible people. It’s an amazing community, and as someone who doesn’t have any physical disabilities, it’s incredible to walk into a room that holds thousands of people with both visible and invisible disabilities. I think it’s something we should all be exposed to a lot more.