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

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 2010s, 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 lived experience of Visual Snow Syndrome, to further inform clinical, research, and consumer communities alike. Methods Forty-nine adults who self-identified as having VSS 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 analyzed 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: 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 specific descriptions outlining 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 individualized approaches to the long-term treatments and supports.