VISUAL SNOW SYNDROME
What SOCIAL MEDIA AND 'GOOGLE GOD' can do about it.

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Visual Snow Syndrome is unknown to many, and it is extremely difficult to explain to those who don't have it.  However, this condition can be experienced through the online world. There are websites that offer VSS simulators, which can demonstrate what patients see in their visual field daily. Equally, this can be helpful in communicating with others about this neurological disorder and simply being understood. Maybe, understood. Some patients report that their family, colleagues, or bosses have not been fully supportive. This illustrates the challenges of coping with an issue that lacks understanding and support from one's immediate physical environment.

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In rare cases, patients get lucky and find a medical professional they can visit who specialises in VS. Dr. Michael DeStefano, a Neuro-Developmental Optometrist at the Visual Symptoms Treatment Center in Arlington Heights, Illinois, is one of them. He says that it is indeed challenging for those with the condition to find someone who will simply acknowledge and trust their experiences. People feel validated when this happens, many report. For those who have the Internet as the only source to gather information about Visual Snow, feeling understood depends on what they find or come across online. Often, there is a lot of information that may frame their symptoms and help get answers, but simultaneously it can often leave people grappling with even more questions than they had at the start.

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​According to Statista, Facebook is the world's most used social network and offers diverse groups for everything, including Visual Snow Syndrome (VSS). The largest of these groups are private yet visible to the public. They offer discussions, experience, and information exchange. Visual Snow has 16.2 thousand members, and another one named Visual Snow Group – 8K participants.

When asked, how he sees social media communities as helping sources for people who have Visual Snow Syndrome, Dr. DeStefano says:

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''I am very familiar with all of them. I like the Facebook support groups. I will say that those actually are pretty nice in terms of providing people who are new to the condition with information. Some people just go in there to vent or ask do you have this symptom, do you have that symptom. ''

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He also mentions that there are platforms such as Reddit, where due to anonymity, people speak too critically and negatively about the job VS doctors, or organizations do. This shows that choosing information source for help and support on the web is crucial, especially when coping with health conditions.

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Uncertainties surrounding various symptoms often drive people to seek connections and answers in digital communities. Some have observed that Visual Snow Facebook groups create over-heightened awareness since many participants post everything they experience, thus making the whole feed very complex and over-saturated. This may lead to even more frustration in people who are looking for answers whilst already feeling quite misunderstood. Jessica, a fashion photographer from Brazil diagnosed with VSS over a year ago, encountered both positive and negative experiences online. She shared her impressions about community support and interaction with someone in desperation for help she came across:​

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The confusing process from realizing that something is wrong to obtaining a diagnosis not only brings worries about what one sees day and night but also fear of becoming blind and a sense of helplessness, as some describe. Often, this is due to misdiagnosis or denial of the condition by medical professionals, which leads to frustration. Similar to Chris's case, when after presenting research papers he had found online, his doctor dismissed it. Dr. Premnandhini Satgunam, an optometrist specializing in Visual Snow in Hyderabad, India, has noticed obsessive efforts of her patients to understand Visual Snow Syndrome by 'asking Google GOD,' as she calls the modern trend of seeking answers. Some of her patients have experienced not only frustration while searching for answers but also a lack of understanding from their loved ones. She shares a story of a woman who spent a large amount of time looking for solutions  online:

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Dr. DeStefano observes the online world  also as a connector for patients:''I've noticed that some people have actually become like friends on Facebook groups, which is nice, and people share articles and stuff.'' But connecting with others online is not the only way how people cope with Visual Snow Syndrome. Amirali, 26, a TEFL Master's student from Iran, actively participates in contributing to spreading awareness about Visual Snow Syndrome. This works as an additional coping strategy for him. After misdiagnosis and unsuccessful psychiatric medicines, he continued to combat Visual Snow's 'harsh reality' online. Amirali claims to have translated the Wikipedia page and other news and developments about VS into Persian for an Instagram account, whilst also funding it. Information on Facebook has also helped him connect and socialize with other VS patients, even leading to the creation of his own support chat on Messenger.

 

 

''Talking to these people and realising I was not the only one definitely helped.''

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​​People who try to understand Visual Snow Syndrome at some point land on the page of an organisation based in Los Angeles, USA, that collaborates with leading researchers and doctors in the field of VS, such as Dr. Peter Goadsby from King's College London. Visual Snow Initiative (VSI) has shared recent developments of their work in support available online for Visual Snow Syndrome (VSI) patients using the business platform LinkedIn.  In partnership with a non-profit corporation AnCan they launched a video chat support project. This service not only helps users through symptoms but also may assist with mental health aspects. VSI has created another online tool for patients to share experiences, and a new community moderated by individuals with Visual Snow Syndrome, offering a space for everyone who needs to be heard. VSI's new project also claims to help against feeling isolated, which is something VS-patients report to struggle with.

 

Created in 2018 by VS-patient, Sierra Domb, VSI has intensively advocated and brought awareness about Visual Snow Syndrome offering structured and in-depth information on their website and social media accounts. This has brought much-needed information worldwide to people who went online to find the answers. Also, they created a 'Find Doctor' function that allows patients to search for doctors in their area, and equally enables doctors to be listed.  Co-founder Paul Domb emphasizes the importance of social media and the online presence of VSI:

 

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Social media has been one of many channels, alongside Google search and other Internet sources, that enable people with Visual Snow Syndrome to connect, share experiences, and find explanations for their condition. The online world has enabled many patients to understand themselves, or finally to find out what they suffer from. Some looked for it targeted, and some came across VSS spontaneously. For instance, Julie, 63, who has had Visual Snow Syndrome since childhood, found clarity about the mysterious dots in her vision after reading an online article about a criminal who mentioned it. Despite the positive help and depth of information offered online, one should consider that every case is different, and social media can oversimplify the condition, as suggested by Irfan Adamally, an optometrist from London:

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​''It's important to focus on individual experiences rather than just labelling, to truly understand and help each person.''

 

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