They feel like insects are crawling inside them. They have lesions and fibers emerge from their skin.
The three women suffering these symptoms are featured in “The Pain of Others,” by documentarian Penny Lane (“Nuts!,” “Our Nixon”). They are among those who claim to suffer from Morgellons disease. But few doctors, if any, acknowledge that the illness is real.
Isolated and denied credibility (perhaps significantly, almost all are women), they resort to putting diaristic videos on YouTube in which they talk about their daily ordeals and discuss far-fetched, possible cures — drinking urine? shaving your head? They share these with other victims and have formed an online support community.
In the film Lane edits together clips from these videos. The result is fascinating, revolting, sad, and funny. And it makes you think about the fine line between voyeurism and empathy.
Lane talked about the film from her home in Brooklyn.
- id="U843301403760kDI" style=" text-indent: 0; ;">Q. How did you learn about this disorder?
- id="U843301403760d0" style=" text-indent: 0; ;">A. I read an essay called “The Devil’s Bait,” by Leslie Jamison, one of the great nonfiction writers working in America today. She had gone to a gathering of Morgellons sufferers and she basically asks what kind of belief is requisite for compassion or empathy. Also, at that time I had just finished “Nuts!” about John Brinkley, who in the 1920s claimed he could cure impotence by transplanting goat glands. It was a scam, but I think some of the people who had the treatment improved because they believed it. So I was already thinking of these questions in relationship to illness and medicine and this confusing landscape of the mind-body connection.
- id="U843301403760cLE" style=" text-indent: 0; ;">
- id="U843301403760XhF" style=" text-indent: 0; ;">Q. You show just the videos but don’t offer any editorial direction as to what the reality is. Why is that?
- id="U8433014037606ED" style=" text-indent: 0; ;">A. When I make a documentary I am trying to reproduce the intellectual and emotional journey. The film tries to replicate my own experience of diving into the YouTube videos. It’s not best described as a documentary, but as a journey into a subculture online. And my experience in it.
- id="U843301403760AhB" style=" text-indent: 0; ;">
- id="U8433014037602JI" style=" text-indent: 0; ;">Q. It’s been suggested that the videos make some viewers experience the symptoms. Do you think it’s spread that way?
- id="U843301403760D8C" style=" text-indent: 0; ;">A. That is happening. But it doesn’t fully explain it. At screenings people walk out of the theater after watching, feeling itchy. It’s a real phenomenon. You see it happening in the movie. Tasha, one of my characters, in her first video says, “I was clicking around online and I was watching stuff and I saw this video and I thought, ‘Oh my God, that’s me! I have Morgellons!’” But I don’t feel it. If I did I wouldn’t be able to make the movie. Also, I have a greater tolerance for grossness than most people. I could have made a much more gross movie and I soft-pedaled it based on early screenings. I wanted to make sure people would keep watching.
- id="U843301403760fmH" style=" text-indent: 0; ;">
- id="U843301403760QhF" style=" text-indent: 0; ;">Q. What did you cut?
- id="U843301403760u1B" style=" text-indent: 0; ;">A. So gross. It really pushed the edge of what I thought was acceptable. Lots of stuff about looking at poop, menstrual blood. Real close-ups.
- id="U843301403760UjC" style=" text-indent: 0; ;">
- id="U843301403760dLH" style=" text-indent: 0; ;">Q. I found the characters tragic. But don’t some people laugh?
- id="U8433014037604S" style=" text-indent: 0; ;">A. A lot of people, including myself, laugh throughout the film. There is irony in it that is kind of what the film demanded. But there isn’t a lot of direction from me as to what your emotional response is supposed to be. In “Nuts!” I was trying to manipulate the audience and then let you in on the joke. Here I’m saying here’s a thing that’s happening. I don’t know what to make of it. How about you?
“The Pain of Others” screens as part of the DocYard series at the Brattle Theatre at 7 p.m.. on Oct. 1. The filmmaker will be present for a Q&A moderated by Boston Globe film critic Ty Burr.Go to www.brattlefilm.org/2018/10/01/the-pain-of-others.