EHS – Electromagnetic hypersensitivity – is a claimed sensitivity to electromagnetic fields, emitted from everyday electrical items, which cause sufferers to experience unpleasant symptoms such as fatigue, headaches, nausea, sleep disturbances, and more.
To try and combat these symptoms, sufferers often have to create barriers between themselves and the radio waves, by wrapping their bodies in special cloths, moving to remote locations, and sleeping in makeshift ‘cages’.
There is limited research on the condition and no official medical diagnosis, therefore there is also very little understanding of it or support for sufferers. A lot of the time they are not even believed, or are thought to be suffering from psychological issues. It can be a lonely, isolating, and frustrating experience to suffer from this invisible illness, and it severely impacts people’s quality of life and their mental health.
Swedish-born animator and filmmaker Marie Liden knows all too well how confusing and debilitating this illness can be when her mother suddenly started experiencing symptoms when Marie was just 8 years old:
I had just got my Nintendo, 8 Bit, and was ready to join this electronic gaming revolution when my mother got struck down with it. It just happened overnight.
That was the beginning of Marie’s journey trying to understand and uncover EHS, and led her to create a documentary film about the topic which premieres this weekend at Docfest in Sheffield.
The making of Electric Malady
The concept for Electric Malady had gone through a lot of changes, but eventually Marie had settled on this being the portrait of a family who were learning how to cope with an illness.
Marie had sent out an advertisement in a magazine to find others who had suffered from this illness, and it was through this that she discovered who would become the subject of her film – William.
My mother was actually going to be the focus of this journey in the film, but then gradually William took over, but before we even got to him we had just received so much interest from people who suffered from the illness.
Marie explains that she even had to get an assistant to help her because there were so many replies to the advert!
William’s father had got in touch with Marie through the advert and said how she had to come and meet his son. When Marie reminiscences on the moment she describes how struck she was upon being introduced to him – William’s illness was more at the extreme scale and she wasn’t really sure whether it was going to work.
After spending half an hour with him she found him absolutely fascinating and really interesting to be around and soon the fabrics he had covered himself with feel like they aren’t there.
The fabrics Marie refers to are sheets with a specific design to filter out any electro interference to try and limit his symptoms. This gives him this look of a jellyfish or ghost which is hard to get your head around, but as the documentary will show, are essential for him.
I couldn’t stop thinking about him or let go of him so I decided to go and see him again where I could also get the opportunity to test some equipment. I wanted to see how we could actually film him and how we were going to process this film making and also adapt to his illness which shaped the look of the film as well.
Marie talks about the equipment she used and how she had to scale back to DSLR cameras, then came the challenges of the microphones too:
It was so very complicated! Even the lighting was a nightmare – at one point we had people angling mirrors from the garden to reflect light into William’s cabin!
For her first feature there is no doubt that Marie dived in at the deep end with this piece – I wondered whether there was ever a moment where she thought that perhaps she might have bitten off more than she could chew?
There were so many times when I said to myself that this was far too difficult and I couldn’t deal with it.
From a funding perspective it was particularly hard – here I was trying to present this film to someone where you can’t even see their face. You mix that in with illness which is always a controversial subject and then people telling you about making sure you have statistics.
The experience felt like she was being bashed around from different potential funders stating that if they added something specific they could offer more money, but in the end Marie and the team stuck to their guns coming round full circle to staying focused on William and his incredibly loving family.
Mental health and people’s perceptions
When we first watched this film we had gone in completely blind, with only the slither of synopsis to go on. The sudden reveal of William covered up in his specially designed sheets was met with smiles – were we supposed to be laughing here?
Inevitably by the end of this film you certainly aren’t. We were left sad and gobsmacked, and letting everything about this complex situation settle in.
Its been very difficult sometimes when people have declared he just has psychological issues and it is all in his head. I was terrified how people might see William because I was very protective of him after bonding whilst making the film.
There is no doubt that the film will trigger much debate and I wonder what Marie wants her audiences to take from her film?
We wanted to steer away from this being an activist film and for every bit of scientific research that says it doesn’t exist there is another that says it does – it is so split down the middle. I wanted to focus on the family and what it means for them to go through something like this.
So what I am hoping for is that people allow themselves to go beyond the illness and try to put themselves in this position – of not being believed.
I hope that the film makes people not judge an illness that we can not even begin to understand.
Later that evening Marie gets back in touch having reflected on our conversation from earlier and shares a further thought with me about her experience filming Electric Malady and the depths of how challenging it really was to her.
Many times I felt devastated after leaving William. I was terrified that it would be the last time I saw him.
A few times it felt really dark and I had to seek professional help on how to cope and navigate the conversations when someone talks about ending their life. And where does that place me as a filmmaker? It was a bit up and down like that through the making of the film.
I felt it was really important showing that in the final film, and to talk about mental health, how dark and lonely it can be when suffering from Electro sensitivity or other invisible illnesses, and that doesn’t mean it’s a psychological illness.
We caught Marie Liden’s documentary when we covered Copenhagen Documentary Film festival earlier in the year and the film still lingers in our thoughts, leaving a profound impression.
Marie has put her heart and soul into telling this story. Now it can finally be shared, which is a huge step forward in raising awareness of this illness and its impact on sufferers and their loved ones, and helping those who are isolated and misunderstood, to feel seen and less alone.
Electric Malady showcased at Sheffield Docfest in 2022, and has now just got a cinema release in the UK in March 2023 so go check it out!
Interview by Alex Minnis