Samantha Shannon is a bestselling author from London who writes epic fantasy and dystopian novels. Alongside her writing career, Shannon lives with Visual Snow Syndrome (VSS), a neurological condition she has experienced for as long as she can remember but was only formally diagnosed in 2025. In this Q&A with the Visual Snow Initiative, she reflects on growing up unaware that her vision was unusual and the emotional impact of finally putting a name to her symptoms. She also discusses how VSS intersects with her creativity and why greater awareness of the condition matters.
Read her Q&A below
Could you please tell us a bit about yourself, including your work as a writer and the personal or professional experiences that have shaped the journey that brought you to where you are today?
I’m a Londoner, a millennial, and an author of fantasy and dystopian fiction, best known for The Priory of the Orange Tree and The Bone Season. I got my first book deal while I was studying English Language and Literature at the University of Oxford, and I’ve been a full-time author ever since.
You’ve shared that you live with Visual Snow Syndrome (VSS). When did you first become aware of your symptoms?
I’ve had visual snow for as long as I can remember, so I assume I was born with it. I distinctly remember trying to ‘paint’ with the dots as a child – I would imagine that I could swirl them into patterns on the ceiling, or on the backs of my eyelids, when I was waiting to fall asleep. Because I’ve always perceived the world that way, I had no idea it was unusual, so I never thought to mention it to my family or friends; I just thought it was how colour and light were expressed to the human eye. I’ve only started to talk about it since I was diagnosed last year.
What visual and non-visual symptoms do you experience as part of VSS?
Pretty much the whole roster of visual symptoms, including the snow itself – my entire visual field is covered in moving dots. I’ve had migraine with aura since I was 18. I also have palinopsia, photophobia, photopsia, and nyctalopia. My visual snow is significantly worse at night; it feels like I’m surrounded by a swarm of black flies. As for non-visual symptoms, I developed bilateral tinnitus last year, and I also experience insomnia, bouts of nausea, and occasional dizziness.
The photopsia was one of my first clues that something was off. About a year ago, I went through a phase of getting a lot of random flashes in my vision, and I casually mentioned it to my optician, thinking it might be related to stress. I remember it puzzling him a little. I’m short-sighted, but my eyes are healthy, so there wasn’t an obvious reason for the flashes. Of course, now I know it was my brain, not my eyes.
When did you realize that what you were experiencing had a neurological name, and what was your path to understanding or diagnosis like?
Despite having visual snow for my whole life, I only realised that it was unusual, or even that there was a name for it, after I woke up with tinnitus in July 2025. Since I don’t have any obvious sign of hearing damage – the most common cause – I became desperate to find an explanation or a miracle cure. As I was scouring the support forums, I noticed a few mentions of VSS. When I saw an image that simulated it, I knew straight away. It was exactly how I saw.
At that point, my symptoms went into overdrive. I was already under a lot of stress from the sudden onset of this phantom noise, and I suppose my brain latched on to the snow as a new potential threat. I suddenly felt like my senses were under constant assault. Not only were my ears ringing out of control, but the visual symptoms were a lot more intrusive than usual, making it hard for me to write or concentrate. I had this one horizontal line, right across the middle of my vision, where the snow became a distracting blizzard, exactly where I would focus on my computer screen. I was also waking up in the middle of the night with vivid hallucinations of exploding lights, squiggles and spirals, all sorts of things. I was terrified that I wouldn’t be able to work if it stayed at that level.
I live in London, so I booked an appointment with Dr Mark Weatherall, one of the few neurologists with a specific interest in VSS. He formally diagnosed me in October 2025. Since then, my symptoms have wound down to their usual baseline. Dr Weatherall reassured me that VSS isn’t thought to be a progressive disorder, and it was comforting to have an explanation for so many things I’d experienced throughout my life. The tinnitus, the aura migraines, the snow, the light sensitivity, the random flashes – all of it probably stemmed from VSS.
Are there specific treatments, strategies, routines, tools, or tips that you find helpful in managing your symptoms?
Managing my stress and taking care of myself seems to help. If I’m hungry or tired or dehydrated, it gets a little harder to tune out. The onset of tinnitus really put my nervous system through the wringer, so one of my goals for this year is to get that regulated as best I can. I started talk therapy in November and I’m planning to do a lot more exercise this year. I take sumatriptan for migraines.
What is one thing you wish more people understood about Visual Snow Syndrome?
I’d really just love there to be more awareness of it, which is why I’m sharing my story. I read that 3–4% of the population has VSS, but I suspect the number is probably higher – people just don’t report it because they don’t realise it’s a recognised condition. That’s one of the reasons I wanted to consult a neurologist, to make sure I was included in that statistic.
Has VSS affected your education, relationships, or professional life in ways that might surprise others?
I’d say the migraines have had the worst impact on all three of those. People often think a migraine is ‘just a headache’ and dismiss its severity. I’ve sometimes had to do public events, hit a deadline, or back out of socialising while struggling against hours or days of eye-watering pain. Fortunately, most of my friends and family are very supportive.
Do your books, or any future projects, explore or reflect aspects of Visual Snow Syndrome, either directly or indirectly?
The magic system in the Bone Season series was partly inspired by my aura migraines. Some of the characters have a sixth sense that allows them to connect with the spirit world, giving them a variety of abilities. Some of them can perceive spirits visually or aurally, and they have auras that show their clairvoyance. They can tap into another layer of reality where they’re sensing things that other people can’t.
I also coincidentally have a group of people called snowseers in A Day of Fallen Night, and although I didn’t initially plan for them to have VSS, I realised they would be a perfect way to explore the condition in my work, so look out for that in my next Roots of Chaos project.
Has writing ever helped you cope with your VSS symptoms, and if so which ones?
When I’m really focused on my work, I find the snow less noticeable. I also find writing cathartic and calming – it helps me to process things I experience. My Bone Season protagonist, Paige Mahoney, develops tinnitus in the sixth book, which I’m working on at the moment. Even though Paige is fictional, being able to explore tinnitus through her has made me feel less alone, and more in control.
What do you hope sharing your story might offer to others living with Visual Snow Syndrome?
The more we talk about VSS, the more people will be able to recognise their symptoms, and the closer we’ll get to a cure and better treatments. Although I don’t mind my VSS too much, it would be amazing to see without it, and I’d do nearly anything to get rid of my tinnitus. I miss silence.
What advice would you give to someone who has just learned they have VSS?
If you’ve lived with it all your life and you’ve suddenly realised it isn’t normal, don’t worry – your brain knows how to adapt and should slowly get used to it again. I can’t imagine how you’re feeling if you’ve just developed it after not having it previously, but please know that it doesn’t have to limit you creatively.