Imagine if everywhere you looked — even in the dark — you saw static, as if the entire world were an untuned analogue TV. For people with a mysterious condition called “visual snow,” that’s the frustrating, often agonizing daily reality: endless static, often accompanied by floating spots, bright flashes, trails of light, and other visual phenomena that make it hard to see or concentrate.
There’s nothing wrong with sufferers’ eyes, and their MRIs always come back clear, so the condition has long been dismissed as a long-lasting migraine aura or a consequence of hallucinogenic drug use. In recent years, there’s been some progress: In 2014, researchers from King’s College London concluded that visual snow was a distinct disorder, one that appears to be related to a dysfunction in the lingual gyrus, the part of the brain that processes vision. But that’s about as far as the research has come — it’s still not yet clear how many people have it, and there’s no cure, nor is there any treatment that helps ease the symptoms. Many doctors have never even heard of it.
Elaine Reilly, a 38-year-old London resident, has lived with visual snow since she was a child. She spoke with us about how this poorly understood condition has disrupted her life, the isolation of living with something so ill-understood, and how she learned to cope even as it’s worsened.
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It’s like living in a magic eye — everywhere I look, little dots are constantly moving. It’s like a fine rain obscuring everything. At its worst, it’s rapid and multicolored; at its best, it’s slower and black-and-white. I’ll be doing something normal, like getting coffee with friends or watching TV, and everything in the room that’s lined or has some kind of pattern is moving. You wouldn’t believe the number of patterns in the world.
It started when I was about 4. I’ve never slept that well, and I remember lying awake, watching the dark move. I thought that’s what everyone saw. When I was a teenager, I had trouble seeing the blackboard, but the optometrist told my mom, “There’s nothing wrong with her eyes — she probably just wants glasses because everyone else has them.”
It got worse when I went to college. I was going out all the time, not eating particularly well, and [my vision] started to become a real problem. When I was reading, I would get a burst of paisley or a moving image on the page, and it was terrifying. I thought I might be hallucinating, or that there was something wrong with my brain. I became agoraphobic at one point because my symptoms were so much worse outside. I honestly don’t know how I finished my degree.
It affects my vision in so many ways. If I look at a bright window, I’ll get an afterimage for a half-hour afterward. I see flashes of light that aren’t there, especially if I go somewhere loud and busy, like a mall or a concert. Being in a fast car is particularly nauseating because everything blurs past — not just scenery, but lines of movement, too. Being in a park at this time of year, every leaf and blade of grass jumps out at me and makes me feel dizzy and sick. I can be sitting down and feel like I’m lurching on a boat.
My eyes are also sensitive to bright light, which causes a stinging pain. Artificial lights like fluorescent or bare bulbs are especially difficult: They give me a headache after about 20 minutes and make the snow faster and denser. My office recently moved into a new building that’s all-white, shiny surfaces and fluorescent lights. The last time I was there, I was sick for days. I had to ask a colleague to walk me to the train station because I couldn’t keep my balance and felt so nauseated.
That’s one of the things I worry about the most — not being able to do my job. I want to be a valued teammate, not some burden that has to be carried. The most difficult thing is how exhausting it is, and not being able to explain to people why I don’t have the energy to do things. I’m 38 and it’s taken me this long to be open about it. I recently told a friend I’ve known for 20 years, and we cried together — that kind of support is invaluable. And I’ve been with my partner Anthony for seven years, and he’s a great advocate. He always reminds me that I’m not losing my mind or being melodramatic.
Some doctors have heard of visual snow, but they usually say there’s nothing they can do. Most of them put it down to anxiety or depression. It’s so frustrating not being listened to — I’ve come out of some appointments and felt a hundred times worse than I did going in. I saw a neurologist in 2010, and as soon as he saw that my MRI was normal, he said it must be a migraine, and that was that. But I’ve had a handful of migraines, and this is something else.
One thing that’s given me hope is that scientists at King’s College London are doing some research into visual snow. It’s such a relief to know that it’s finally being recognized. I don’t expect a cure in my lifetime, but I hope it will become a legitimate syndrome so that you can go to a doctor with it. And then, perhaps, employers will make accommodations, like working from home or in a nonfluorescent environment.
I’ve made a lot of lifestyle changes. I take screen breaks and work as often as I can from home, where I can have the curtains half-closed, which makes a big difference. I’ve cut down on spicy foods because they seem to make it worse, and I’ve also given up booze. I used to love drinking because alcohol dimmed everything. But the next day was always difficult, even if I’d only had a drink or two. If I go on a vacation that involves traveling now, I book two days off afterward so I can overcome the fact that my senses have been overloaded with light and noise. At concerts or weddings, I’ll duck out for a while, put my sunglasses on, and sit somewhere quiet. And if I need to lie down, I lie down.
In my darkest moments, I think, “Can I really live like this?” I give myself a break on those days and go to bed early. Then I get up in the morning and carry on. For a long time, my life crowded in on me, but I’m pushing the walls back a bit now.