I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents.
Growing up, I was always a clumsy child with NHS specs and name calling was involved. I knew I had something called nystagmus but thought it was just a term for poor eyesight.
I had no confidence and often found myself walking into the wrong room or talking to the wrong people. Throughout my awkward teenage years, I relied on memory to navigate, often not knowing where things were, especially computer screens and other locations. However, once shown, I could find my way around. I lacked the confidence to go to college or university, but spent my late teens and early adulthood like most people: I got married, had children and while my friends and family always knew I had poor eyesight, they didn’t realise the full extent of it.
It wasn’t until I had more time on my hands and started to struggle more (partly due to age) that I began to research my conditions: partial albinism, astigmatism and of course, nystagmus. I had a light bulb moment and realised that all the things I struggled with growing up were related to these conditions. I strongly recommend that people learn about their eye conditions. It is now so important that we talk about them, spread awareness and ask for help. It is encouraging that there is support available for younger generations through organisations like Nystagmus Network. Hopefully, they will not have the same lonely and sometimes isolated life that I had due to the lack of awareness and help. Please don’t get me wrong, I don’t wallow in self pity; I love my life—it’s just a bit harder at times.
