Beth is a writer from Australia and has written this great piece for The Big PICture blog on her eye condition, Retinitis Pigmentosa. A big thank you to Beth!
Rising up with RP
Hi, my name is Beth (Bethany). I’m 24 years old from Adelaide, South Australia. I’m a writer of adult fiction, short stories and poetry and in 2018 I was diagnosed with a rare degenerative eye disease called Retinitis Pigmentosa.
RP is an umbrella term for a group of eye conditions concerned with the breakdown of the cells in the retina, the light sensitive part of the eye. It is characterised by poor night vision or night blindness, decreased peripheral vision or tunnel vision, blind spots and can include other symptoms like floaters, glaucoma, retinal detachment and cataracts. There is no cure, only a few gene-specific experimental treatments in some parts of the world. Although it is usually an inherited disease, I am the only known person in my family that has it. The speed of the progression of sight loss varies greatly from person to person and it usually presents in young children, although it can manifest in early adulthood and later in life.
One of my best friends from high school also has RP so before I was even diagnosed with it, I knew a little bit about it. After a conversation we had about their eyesight and how the disease affects them, I did a very brief, rudimentary google search. In the back of my mind, I wondered if I also had RP because a few of the symptoms were familiar to me, particularly night blindness. For a long time, I shied away from the idea that something was wrong because my greatest fear growing up was going blind. I still struggle with this thought, even now.
It wasn’t until I saw my optometrist for a routine check-up that I was told something might seriously be wrong with my eyes. I finally admitted that I was seeing these odd, shimmery visual disturbances during the day and that at night, I struggled to see. He photographed my retinas and told me they were quite thin. He also told me that he had seen other clients with thin retinas and they had no issues. Still, he referred me to an ophthalmologist in the city, the same doctor my father was seeing for unrelated glaucoma, and she suspected that I might have RP. She then referred me to a retinal specialist and he was the one who finally diagnosed me.
Initially, it was a blow to my sense of self and mental health. I was told that I should seriously re-think pursuing my driver’s license, which I was actively doing at the time. I only had a few hours under my belt before I decided that it would be safer for me to stop. This loss of independence is still something I’m working to accept to this day, three years after diagnosis. Knowing that you’re living with an incurable disease that is slowly robbing you of your sight and your independence along with it, is difficult. It can feel very isolating, lonely, frustrating and hopeless, especially when outwardly you appear ‘normal’ because you don’t yet use a white cane or guide dog. I think it’s very easy for others to judge when they can’t visibly see what you are experiencing.
In February of 2021, I shared my story and experiences with vision loss across my social media, as part of RP awareness month. Until this time, I had kept my condition to myself and my very close family and friends. It wasn’t something I often talked about, although the knowledge that I’m slowly going blind crossed my mind several times a day, every day. The response I received was overwhelmingly positive and I’ve since found an incredibly supportive, informative, kind, uplifting, diverse and amazing online community of people living with vison loss, as well as visible and non-visible disabilities. I’ve learned so much and continue to every day and I’m so grateful for the messages I’ve received from people who have found a part of themselves in my story. Sharing our stories is such a powerful, important thing, for acceptance and building connections and to break harmful stereotypes and misconceptions about blindness and disability.
I’m very lucky to have good peripheral vision currently, although at my last appointment in March, my specialist confirmed that my blind spots, which are most noticeable in my left eye, had amalgamated into one large blind spot. It’s snugged up close to my central vision, so that if I’m holding my phone in my left hand and looking at the screen, my thumb and everything surrounding it disappears. If I’m looking at your face, I can only see one of your eyes at a time and I can’t see your nose, mouth, chin or neck. The same goes for when I look at myself in the mirror. I’ve missed a lot of fist bumps and high fives and fallen down the stairs twice, both times happened prior to my diagnosis. I bump into walls and doorways a lot, especially in low light and I need help navigating the cinema. But I’m also very lucky in that my partner is my second pair of eyes. He guides me if we’re walking in a dimly lit area or at night time. Another thing that really helps is the flashlight feature on my smartphone!
Hopefully later this year I will be undertaking my genetic test to see what gene mutation I have and find out whether or not I am likely to pass this on to any children my partner and I may have. In the meantime, I spend my days writing and reading, appreciating our garden and what I’m still able to see, spending time with family, raising awareness and advocating for people living with visual impairments. The most important things I’ve learned so far on my sight loss journey are that disability is not an inability, it’s just the way in which we live our lives differently and that even though it’s a big part of our daily experience, sight loss is not where our lives stop.
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