Living with Visual Snow Syndrome

Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning or cold prickling sensations in her body, and a sense of depersonalization. Overall, this is an overwhelming and debilitating constellation of overstimulating sensory experiences that has drastically changed her life.

Willemijn’s journey with VSS started about a year ago, but this was not her first unexplained health crisis. Several years before she had woken up with her legs no longer working, precipitating the need for a wheelchair for the next 6 months. Doctors never figured out why this happened, partially because the problem was worked through in physical therapy while Willemijn waited a year to see a specialist. Her visual snow started when she was about 20 weeks pregnant, and when her son was born she experienced a thyroid issue that eventually turned into Hashimoto’s disease. Dealing with her day to day symptoms has been frustrating enough, but the lack of answers or support from medical professionals has been deeply discouraging.

In this episode of the Major Pain podcast, Willemijn tells us what it’s like to live with visual snow syndrome, and talks us through her medical journey so far. The onset of VSS has felt like she’s in some kind of glitch where she doesn’t feel like herself anymore, which has understandably led to anxiety and depression. Still, Willemijn has hope that researchers will uncover clues about how to treat this mysterious disease in the future. In the meantime, she has learned a great deal by connecting online with others going through similar things. She hopes that by sharing her story she can shed a light on VSS, spreading awareness about the disease itself, and the importance of continued research.

Learn more about VSS at the Visual Snow Initiative’s website: https://www.visualsnowinitiative.org/

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