For Nystagmus Awareness Day 2022 we’re giving you the opportunity to share your story to help others understand the impact of the condition.
You can share your story here
This is Bryony’s story …
I was diagnosed with congenital nystagmus as a baby. I wasn’t really aware of my impairment as a child, only that my eyes were a bit wobbly. I know now that my fears of crowded places and escalators, as well as having to turn my head to be able to look straight at a camera, were as a result of having nystagmus. I remember ball sports being something I hated. There’s only so many times you can enjoy being hit in the face! I was rarely able to read what teachers put on whiteboards at school and felt too embarrassed to say anything. I’m fortunate to have supportive parents who took the time to understand my impairment and did their best to make teachers aware of how it affected me.
My teenage years were when the impact of having nystagmus hit me. The excitement of my first driving lesson soon faded when I wasn’t able to read a number plate at 20 metres. After seeing a specialist I was told I wouldn’t be able to drive. I felt like my chances of independence and progressing in life had been taken away from me. I was crushed, but after a while I became determined to prove that not being able to drive wouldn’t stop me from being successful.
I went on to study Environmental Health at university but not without challenges. An example was at an interview for a third year placement. It was going well until the dreaded question…can you drive? As soon as they found out I wasn’t able to they were no longer interested in taking me on. Again, I was devastated, but more determined than ever as a result.
I graduated with a first class honours degree and moved to London to start my career in Health and Safety. It was the best decision I made. Hardly anyone drove in London and I only had to wait a couple of minutes for a tube, a far cry from the hour wait for a bus back home! My confidence grew and I went on to enjoy 10 happy years living in London.
I now live in my home town of Bristol, with my husband Luke (who I met in London). I work as a Health and Safety Advisor for a FTSE 100 company. Yes I still miss not being able to drive, but public transport is much more efficient now and I get the important role of resident DJ during car journeys! I’m proud of what I’ve achieved, despite having a visual impairment. There are still challenges. I often pass people in the street who I don’t recognise only to find out it was someone I knew, which mortifies me! It also upsets me when I’m not able to see something that others can.
I’d like to say to anyone recently diagnosed with nystagmus, or if you are struggling with the thought of not being able to drive, that having this impairment doesn’t need to define you. My experience is that it makes you stronger as a person and more determined to achieve your goals.
