Ruqaiyah stands outdoors wearing black-framed glasses, a bright, floral dress and a head scarf. She has one hand on her hip and is looking confidently at the camera.

I was diagnosed with retinitis pigmentosa, a genetic condition that gradually causes vision loss, at 5 – and growing up with this condition was not always easy. I’m 20 now, and only have my central vision left.

Living with RP

In primary and secondary school, I tried my best to hide it, but it did not work. I had to ask to sit closer to the front of classrooms and make any text on projector screens as big as possible. At this time, I kept wishing that I were normal and that I did not have this impairment (which now I know is a part of me that I have learned to accept and love).

Trying to pretend that I did not have this condition when any teacher would dim the lights was a daily challenge. Eventually, I had to tell them all about how this affected me – and that it is a part of me that will never go away.

Learning to Accept RP

As the years went by, I found ways to slowly accept what this meant for me and how I can adapt my surroundings to help me balance the sight that I have left and the challenges that I face ahead.

When I was 16, I was told that I couldn’t learn to drive, which hit me at a deeper level because learning to drive gives you a sense of independence, and I felt like that was being taken away from me.

From that point, I was fixated on developing something that could cure RP – but I wasn’t enjoying all the things that I loved. I wanted to do biomedical science, but when I got my AS Level results, I had a reality check – and it was then I realized that I was only doing things to get rid of the thing that was already broken.

From then on, with the help of my family, I decided to go to Shipley College to study Software Development and Programming and found the thing I fell in love with. I am now at Bradford University studying Computer Science and this was one of the best things that I could do for myself.

Moving Ahead with RP

I usually do not tell a lot of people about my condition because some will always judge and have a closed mind. To the naked eye, you would not be able to tell that I have RP. I do not use a guide dog, a white cane, or the dark glasses. In dim lighting, people have judged me for walking slower than usual, using a torch, or having anyone guide me by holding their hand.

I know that I will be blind eventually and my doctors say that it will occur in my early 40s. This is terrifying for me. Being resilient and having a special support system has helped a lot and, with the help of BlindNewWorld, it has been amazing to know that there are people out there who will share their meaningful messages in our community.

About the Author

Ruqaiyah Patel is a student studying Computer Science at Bradford University. You can find her on Instagram at @Ruqs404 and on Snapchat at Rockyy_404.

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