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Warrior of the Week

These inspiring individuals with Visual Snow Syndrome are sharing their experiences living with this condition and how they try their best to overcome its symptoms everyday.

Spotlight on:

Olivia Deane

To anyone at the beginning of their Visual Snow Syndrome journey, it is, so cliché to say, but I promise you with my whole heart that it gets easier to manage once you find the strength and inner peace to continue going about your life.

I know how utterly lonely and panic-inducing it can feel to know that, as of right now, there is no official cure. And personally, it almost completely derailed my life to lose my vision as I had always known it to be. I struggled so much, and I often still do. To see floaters everywhere, I look. To close my eyes and see bright white lights shining back at me. Words on a page are moving around. Not being able to look at block colors. Static vision over everything.

People ask, “what time of day don’t you have those symptoms” and the gut-wrenching feeling when you truthfully say, “never.” Because whether my eyes are closed or open, it is always there. But I believe it’s manageable if you allow it to be. And I am proof of that! I still live a pretty normal life. But I do want to be realistic. So yes, after a day of staring at a screen at work, I find it often impossible to watch TV, read a book, or look at my phone. I can’t bear to keep my eyes open and have a throbbing headache. But actually, I kind of look at the positive side! Because in the evenings and on weekends, I try to keep away from screens. I interact with people more, and I find activities I like doing, such as painting and listening to podcasts.

I don’t just rely on screens as entertainment. I also see all the extra lights in the night sky as beautiful. Very few people see what looks like a galaxy of stars in the night! When I let it consume me, it does precisely that. It eats me alive. And when I tell myself I am so strong and can keep going through it all…I do precisely that.

It’s all about your mindset.

Being diagnosed with VSS was a savior. Because of the flashbacks to when I had no idea what was going on, and I was hysterically crying in the middle of multiple hospitals, their waiting rooms, different GP surgeries, everywhere, just begging for the doctors to please hear me out and believe me that something was wrong. I genuinely thought I had a brain tumor.

Even though this feels like a life sentence, and I do feel that at this point it is a lifelong invisible disability, so much good has come out of this for me. I’ve stopped bad habits, prioritized my well-being and health, and I try to keep my stress levels as low as possible (as this considerably aggravates my symptoms).

I’m just so grateful for life and general health in a way I never understood. I must say that I don’t think I would have overcome the deep depression side of this all without the VSI community. You guys made me feel normal and a part of something at a time when I could not have felt more alone.

Also, shout out to my mum for being my rock throughout.

The journey of acceptance will never be linear, but what is? We have soo got this!

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