I developed visual snow more than one year ago, out of nowhere. Never really understood what triggered it, which was very frustrating in the beginning, but with time I came to realize that it doesn’t really matter. My visual symptoms are relatively mild, enough for me to be in negation in the first months, not accepting that something was wrong, not telling anyone about it, and trying to move on with my life. Also, I had depersonalization, which was scary (still have it).
Eventually, I decided to look for professional help. I think many people with VS can relate to how stressful it is to visit countless doctors, do countless exams, during months, not understanding what’s wrong, doctors telling you’re fine, tests results saying you’re fine (which is good of course), but you know you’re not fine. Eventually, a top expert neurophtalmologist confirmed my VS diagnosis, said that it probably won’t get worse and literally said that the best thing I could do about it was to stop thinking too much about it and move on with my life. Ok, easier said than done. But this was actually kind of liberating. First, it was the last doctor I’ve seen, so not having weekly appointments or exams was a good start on trying to move on. But to this day, I try to apply his advice and it’s been slowly getting better.
I firmly believe acceptance is the way. But it’s a long and tough journey towards it. You get anxious, frustrated, sad. The symptoms are mostly out of our control, obsessing about it and wishing it to stop is unhelpful. But they are there, 24h/day, every day. Again, i know that my symptoms are relatively mild and I can only empathize with people with tougher symptoms. In practice, the main things that have been helping me to cope in the daily life are: 1) physical exercise, 2) mindfulness/meditation, 3) psychotherapy, 4) doing things I enjoy (such as being in nature or with loved ones), 5) a good sleep routine. It’s a long term journey, with its ups and downs. There have been difficult periods for sure. In these difficult times we should rely in our support network, partner, family and friends. I think that just remembering how good it is to love people and have people that love you and care about you is very powerful and makes everything worth it.
Another point of view that helps me is a spiritual one. I like to think that this is part of my journey on this planet, for a reason I don’t understand yet, and that I will get through it, learn with it, and get out stronger and wiser. It’s also easier said than done, and I’m definitely not a wise acceptant Buddha. But I feel that this positive perspective simply is more helpful for me.
I’m sure medicine and research on VS will evolve a lot in the next years and decades, and it’s important to follow and support these developments, and who knows, new promising treatments may arise. But i don’t want to count on that, as it’s out of my control and could be still far away. I prefer to work on myself and my journey of acceptance. Slowly, day by day, one step at a time. With ups and downs.
I don’t usually like to expose my personal life publicly, but I realize how the VS community is important, how people help each other. If this text can help even only one single person, then it’s already worth it.
