Emily is from Birmingham and at 22 she has recently graduated from the University of York having read English Literature for the past three years. Emily is now working with us at Focus as a Marketing & Fundraising Intern! When Emily was 11 she was diagnosed with the genetic, degenerative eye condition, Retinitis Pigmentosa (RP). As part of celebrating #RPAwarenessMonth, Emily gives us an insight into what it’s like living with RP…

I remember always having to wear glasses, always having to sit at the front of the class, and always falling over! So, I was classed as a clumsy, ‘nerdy’ looking and yet not particularly intelligent child – because you don’t know what you don’t know. We knew I was struggling in Primary School and we knew I was short-sighted, but we didn’t know that when I was 11 I would receive a diagnosis that would dramatically change mine and my family’s lives. As much as you don’t want to hear that you have a disease, if you do have one, it’s probably best to know about it. I was simply attending my routine opticians appointment, I’d always liked the opticians – admittedly, I fell for trick of thinking the eye tests were in fact fun games. However, this appointment was different to the previous, when looking at a picture of my retina, the optician was concerned that she could see what looked like freckles on the back of my eye. None of us knew what this meant, but I remember that my mum seemed scared, so I was too. From then on, we went to lots more appointments, with lots more tests – they definitely didn’t feel like games anymore. I had wires stuck to my face, lights flashed in my eyes and given endless pictures and texts to look at. I was only a child, I didn’t understand any of it, I was terrified. Eventually, I was diagnosed, we sat there while the doctor told us all about a condition called Retinitis Pigmentosa – I couldn’t even pronounce it, let alone begin to comprehend what it meant. As RP is a genetic condition my younger brother Will who was only 7 at the time was also tested and diagnosed – for a rare disease, it was becoming very common in our family. 

I continued in mainstream education and I was fortunate enough to attend a very supportive Secondary School, unfortunately I know that most blind/visually impaired students can’t say the same. At school, measures were put in place: I received extra time to complete work and exams, some of my exams lasted for more than 6 hours; everything was enlarged, I was drowning in A3 paper; and at 13 I began cane training (although I would not actually start using it consistently until I was 21). I loved school and learning, but school was hard, I was different and teenagers are mean. Nevertheless, I tried to keep up with my peers, I had to work a lot longer and a lot harder, but in 2017 I received all A’s in my GCSE’s!

When I turned 17, I started noticing big changes to my vision. While my friends started learning to drive, I was learning how to navigate A-levels without being able to read my textbooks. I was determined to be seen the same as my friends so I kept my disability to myself. Interestingly, as much as I hid my condition, I, myself refused to hide. So, I went out partying, clubbing, and would get quite literally blind drunk. As much as I do love going out, it can be really disorientating and scary, but I felt the need to portray myself as ‘normal’ and coping… but I wasn’t.

Like all my friends, I also applied to University. I had always wanted to go, but I was genuinely terrified. I decided to go to the University of York to study English. I moved 3 hours away from home, to a place I barely knew, with people I’d never met and none of whom knew me or my medical condition. Once again, I tried to hide my disability, in fact to this day there are people in my life unaware of my sight loss, so if you’re reading… surprise!

I wanted to be seen as a person and not as my disability, not as ‘the blind girl’. University was not what I had envisioned it to be, for the first few weeks I cried in my room and longed to go home. However, I was too stubborn to drop out, and I’m so glad I didn’t because in the next 3 years I met some of my favourite people, and learnt so much about life and myself. In saying this, my second year was one of the hardest years of my life, I lost most of my sight and was registered blind. I felt devastated and very much alone. I struggled on through my degree, trying to adapt to my new level of vision and questioning why I chose to study English when I couldn’t physically read books! Nevertheless, last summer I finally graduated (probably thanks to Audible) and I’ve never felt so proud of myself – mainly because I didn’t fall over – I walked across that stage with my head held high and my cane held low.  

After graduating I was hesitant to embrace ‘adulthood’, I knew that my medical condition would affect how employers would view me, after all, only 33% of visually impaired adults are employed. I started trying to pursue a career in Marketing. I felt that many employers seemed ‘inspired’ and yet uninterested in my story and my application. I was disheartened and deflated, and the worry that I wouldn’t be able to keep up with the lives of other people my age remerged. However, when I interviewed with Focus it was apparent that they understood that my disability was not in fact an unmoveable barrier, but something that makes me the strong, intelligent, compassionate and determined person that I am today… if I do say so myself! Joining Focus reaffirmed my hope for a fulfilling career and an exciting future!