“I feel like I’m in a dream”: a qualitative investigation of the lived experience of Visual Snow Syndrome

Objective: To highlight lived experiences of Visual Snow Syndrome, and characterize its impacts on daily life. Background: Visual Snow Syndrome (VSS) is neurological condition typified by persistent visual snow, or static throughout the visual field, alongside additional phenomena that impact night vision, visual perception, and visual processing. Only formally characterized in the last decade, little consideration has been given to the broader impacts of this condition on the lives of those who experience it. This study presents the first qualitative investigation of the subjective experience of Visual Snow Syndrome, to further inform clinical, research, and consumer communities alike. Methods: Forty-nine adults who self-identified as having Visual Snow Syndrome completed an online survey that queried the good and bad aspects of VSS, and its general impact on their daily life. Their qualitative data were analysed iteratively, to determine the key themes represented across and between individual responses. Results: The lived experience of VSS varied both inter and intra-individually across this sample. Responses endorsed several themes, related to mental health and psychosocial wellbeing, functional vision, the dynamic course of visual snow syndrome, clinical challenges, and medical system limitations. The majority of participants described their VSS as a negative component of their daily life, with impacts to mental health and psychosocial wellbeing, and functional vision the most commonly endorsed themes. Specifically, participants described how living with VSS worsened their mental health, cognition, sleep, daily routines, visual quality, and comfort in both natural and artificial light. However, one third of participants were able to identify some positive aspects of their visual snow experience, highlighting that it can bring unique meaning and fascination to their lives. Conclusion: VSS has broad and varied impacts on the day-to-day lives of those who experience it. It can introduce substantial mental health and psychosocial wellbeing challenges and functional vision impairments, but also a unique, and sometimes beautiful perspective. These experiences, paired with its variability between and within persons, indicates a need for more holistic and individualised approaches to the long-term treatment and support of people living with Visual Snow Syndrome.