By Tahnee Campbell
I was diagnosed with Retinitis Pigmentosa when I was very young. I’m now 36, living alone in a privately rented flat, and working part-time as a receptionist and part-time as an independent author. My eye condition has just always been in the background of my life. I don’t remember what it was like to have perfect vision so I don’t miss it. Like other young people with my condition, I’ve created ways to overcome the obstacles caused by my reduced vision. For example, I can’t drive due to having no peripheral vision so I use taxis. Therefore, whenever I’m asked how my eye condition has affected me, I have to remind myself of all the little things I do in order to continue living as independently as I do. Like I said, my eye condition has just always been in the background.
BucksVision have asked me to relate my own experiences of being a young person with a visual impairment to mark Youth Mental Health Day. I want to start by saying I’m fortunate in that I have siblings with the same eye condition as me so we regularly discuss and share our experiences (good and bad). Having the support of people who have had similar first-hand experiences makes a massive difference in feeling able to deal with the emotions and traumas which come hand-in-hand with being visually impaired.
It’s also helped me realise that the biggest way in which my Retinitis Pigmentosa affects my mental health is when it affects or prevents my independence. For example, being obliged to let a friend guide me through a dark pub when I’m accustomed to usually finding my own way can feel humiliating. It can also make me feel as though I appear immature and helpless to others. Another example is tripping over a chair in a pub because it’s the same colour as the floor. My embarrassment can be extended beyond the initial incident because others assume I’m drunk. This can be particularly frustrating after an evening out with work colleagues as they can spend months afterwards accusing me of being blind drunk when, in reality, I was simply blind. At times, it can feel frustrating and infuriating that I’m unable to do certain things through no fault of my own because of an eye condition I can do nothing about.
Yet, at other times, having Retinitis Pigmentosa makes me feel more determined. In my writing career specifically, I feel driven to achieve as much as possible in spite of it. I’ve never agreed with labels and I’m determined not to allow my impairment to define me. Yes, it affects some aspects of my life but it isn’t my life in its entirety. Even when the condition progresses and I have to find new ways of living independently, my Retinitis Pigmentosa will always be in the background. It can be both the weight around my ankle and the wind in my sails. In the end, I know I’ll achieve my ambition of becoming a successful author and it will be both in spite of and due to having Retinitis Pigmentosa.
It's common to experience strong feelings about sight loss and there may be times when you wish you had some emotional support. If you need to speak to someone who understands sight loss, the RNIB offer emotional support through their Sight Loss Counselling team, a group of professional telephone and online counsellors. How to contact the RNIB Sight Loss Counselling team.