“It’s been about a ten-year process. It was a really difficult film to fund because it’s not a sexy subject and it’s very controversial. A lot people don’t even believe it.” Marie Lidén is talking about her sensitive and sublime documentary Electric Malady, which has just been nominated for a BAFTA.

Today, Lidén lives in Scotland, a country she fell in love with during her studies in the UK. But the story she’s pursued for the last decade led her back to her roots in a small town in Sweden – and back to her childhood.

When she was eight, Lidén’s mother came home complaining she felt ill. “She was really light-sensitive and felt like her bones and skin were on fire,” Lidén recalls. “Almost overnight, she began to have these very odd symptoms that we later, by a process of elimination, worked out intensified whenever she was near the stove or the TV. She thought she was having a nervous breakdown, because she couldn’t possibly be allergic to electricity!” Meanwhile Lidén, fuelled by childhood imagination, had her own ideas: she thought her mother was a vampire!

It wasn’t until her mother read a newspaper article about a woman who had to live in the forest because of a strange illness, that she realised she was experiencing the same symptoms.

Allergic to modern living

That illness is called Electromagnetic Hypersensitivity (EHS). While medical professionals say there’s no scientific basis for the symptoms, there’s no doubt that those affected by it are in very real distress.

Lidén says: “We went up to the forest to see this woman… and I remember thinking that it was so cool. I thought ‘wow, this woman lives in a caravan with this cage to keep out the radiation!’ It was like something from a sci-fi story but, on the journey home, mum was sobbing because she thought that she might have to leave her children.” Lidén’s mum was one of the lucky ones. They managed to adapt the house, rewiring everything, using candles and oil lamps where they could, and eventually she got better.

It was this experience that led Lidén to make Electric Malady, which follows the story of William Hendeberg, whose EHS has forced him to live in virtual isolation. “At the beginning, the film was going to be about my experience. Then we began talking to other electro-sensitives. We were in the late stages of editing when it really became William’s story. His part in it had grown and grown and I fell in love with him and his family, who were obviously going through this extremely difficult time, but had such a wonderful outlook on life. They have this love and connection that’s so real. It’s an inspiration,” says Lidén.

Marie Lidén: On filming the unfilmable: Documenting the people allergic to electrity

Image from Electric Malady.

Lidén’s film is heart-warming and devastating. William’s raw honesty is easy to connect with, despite the fact that he’s literally under cover for most of the film. But it’s as the documentary unfolds that we begin to appreciate the extent of the toll EHS has taken on him.

William emerges, through flashbacks in home-movies, as a carefree young man relishing life and its prospects. When EHS struck, it was without warning. His girlfriend got sick first and, when he stepped in for her at work, he developed the same symptoms.

Getting better meant getting off-grid but, when the grid is everywhere, that isn’t easy. William retreated to Sweden’s isolated forests near Närke where he now lives, in a house lined with foil, hidden under layers of copper-infused fabric, to shield him from a world that makes him sick.

“Having grown up with my mother, and knowing how sensitive she could be, I did a lot of testing before we started filming. At the beginning, we used a hand-cranked 15mm film camera. Later, we figured out that we could use a small SLR camera if we stayed away and used long lenses. I was using non-transmitting microphones, using mirrors to angle light from outside. All our devices were kept as far away as possible and were battery driven. But our presence in William’s room still had a physical effect on him. A few hours of filming meant that he would have to recover for a whole day afterwards. So, it was really complicated process, but that’s also part of the look of the film. The process of compromising on equipment gave us this layered texture, which I love,” says Lidén.

Marie Lidén: On filming the unfilmable: Documenting the people allergic to electrity

Image from Electric Malady.

A Healing Process

If Electric Malady is tough to watch at times, it was equally difficult to film. “William really wanted to do the film…we talked a lot about it and made sure he was okay. But it was still hard because you’ve got your character who is talking about suicide, telling me things that he wasn’t telling his family, and that was very tough,” recalls Lidén. “I had to seek help. I had to speak to a psychiatrist, because it was really difficult for me emotionally. We filmed for seven years and sometimes I would think, maybe I can’t use this. What kind of film am I making here? What does it say about me as a director? Am I making an exploitative film? So, yes, it was a very hard to make.”

Despite the stresses of filming, William has clearly benefitted from finally finding an audience who will listen without judgement. Lidén hopes her documentary will help others too because, while EHS is not as well-known as ME or fibromyalgia, William’s experiences are sure to resonate with anyone living with an invisible illness.

Mainstream society likes to put people in neat little boxes, especially when it comes to sickness and health but, as Electric Malady shows, the reality is far more complex. Lidén’s film is not just about EHS. It’s about people who fall through the gaps in diagnosis and end up isolated, feeling like they have failed, rather than it being the system that has failed them.

“So many electro-sensitives go to the doctor and are told there’s nothing wrong with them. They go to another doctor, who says the same, and then maybe they try therapists. After that, they’re on their own, trying to find their way out of this void,” says Lidén. “It’s incredible that people are responding so well to the film. It’s been such a win for those with electro-sensitivity and similar illnesses.”

Electric Malady was released by Conic in UK/Irish cinemas in March 2023. A Q&A tour with the director will visit selected cinemas.

Marie Lidén: On filming the unfilmable: Documenting the people allergic to electrity

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