The Guardian has published an article titled “Experience: I see the world through a layer of snow,” written by Isobel Macmillan-Scott. In the piece, she shares her experience living with Visual Snow Syndrome (VSS).
Isobel’s Story
“My condition has a name – visual snow syndrome – and it could be with me for the rest of my life”
It was in February of this year that I first noticed something wasn’t right. I was coming to the end of my maternity leave with my second child, and had recently retrained from being a wedding cake-maker to a food stylist, something I loved. As well as looking after two kids with my husband, Chris, I was picking up lots of work.
That week, I’d just finished a big job and was exhausted. I began to notice flashing lights in my vision. I assumed it was a migraine from overworking – I used to get them as a teenager – and didn’t think too much of it.
The next day, we left London for the weekend to visit my parents. I woke up that morning and everything felt strange – overwhelmingly bright and vivid, as if someone had plugged an electric current into the world. It was like seeing through static.”
A few nights later, as I was putting my son to bed, I couldn’t see his face properly. I started to get really upset. Was I gradually losing my sight? Surely not, at 39? I didn’t have a headache, so it didn’t feel like a migraine.
The eye department said my eyes were fine, so I tried to put it out of my mind. A few days later, I was working in a bright-white studio, and everything felt overwhelming again.
“Every night I wake with shaky hands, fuzzy vision and thick fog in my head“
Googling my symptoms, I came across something called visual snow syndrome. At first, it sounded like nonsense, this syndrome with a strange name and affecting about 2% of the UK population. But every post described what I was experiencing.
In April, when I saw a neurologist, she confirmed the diagnosis. There is very little knowledge about it and no known cure. She offered epilepsy medication, but as there was no guarantee it would help, I decided not to take it. The diagnosis was validating, but crushing. No one around me had heard of it. Even most doctors haven’t.
I’ve had to adjust my life in many ways. Some days are better than others – it depends on stress or how much sleep I’ve had. I wear sunglasses almost all the time – even indoors – because of the light sensitivity. I’m also considering joining a support group through the Visual Snow Initiative, to not feel so alone.