Karen has kindly shared her experiences of RP and CBS for The Big PICture blog. Karen raises awareness of her condition and life with sight loss on Instagram too, so please give her a follow on @justablindishbumble_.
I’m Karen (F33) and I have Retinitis Pigmentosa and Charles Bonnet Syndrome, and I have been diagnosed for roughly 17 years now. I was initially diagnosed by happenstance when I was 15 when attending a hospital appointment for another condition. But I had been living with some of the more generic symptoms my entire life, just no one joined the dots together until my mid-teens.
I always had terrible night vision – which is one of the forerunning symptoms of RP. I remember when I was in the Scouts (age about 11/12) and would go on night-hikes I simply wouldn’t understand how others could see and I couldn’t. I then started developing floaters, and difficulty seeing when I suddenly went from light to dark or visa versa. I am also very sensitive to bright sunlight, or ‘glary’ light on cloudy days – the sun maybe behind the clouds but I can still struggle. Simple glare from daylight can lead to discomfort.
My diagnosis came from a hospital appointment regarding a totally different condition (Neurofibromatosis T1, which shares some of the symptoms) when the consultant I was visiting noticed my retina had the ‘black spots’ which is ultimately the parts of my retina that no longer responded to light. I had needed glasses from a very young age and had regular check-ups because of the severity of my short sightedness but nothing had been noticed until I was 15.
Regarding the Charles Bonnet Syndrome (which causes visual distortions, flashing and moving lights, kaleidoscope images and other hallucinations in my visual periphery where I no longer have sight), I have only recently started discussing the symptoms with my optometrist (who is amazing, and always willing to give me advice as and when I need it) but as there is little research into CBS in people as young as I am, there really isn’t much medical support out there. I have resorted more to blogs, Instagram, and Facebook support groups for this.
As far we are aware I am the only member of the family to have this condition.
How does the condition affect you?
The condition affects me in various ways; I have restricted peripheral vision and now use a symbol cane on a daily basis – I am in discussions with Sight Scotland to have mobility training with a full-length ID cane. The floaters no longer bother me, I think I am so used to them I just ‘see through’ them now. The progressive loss of even more night vision is something I have become acutely aware of in the past few years.
I am currently a Master’s degree student at Edinburgh Napier University, and have been incredibly lucky that the university have the resources and support systems in place to make my time back at University as smooth as it can be. I was fortunate enough to receive excellent assistance from DSA and have consequently taken part in discussions with university staff and students in a regular forum for the University’s Disability and Inclusion Department.
Have you had/been able to have or try any treatments at all?
So far, I haven’t been offered any form of treatment as there are no treatments available for RP, but I have made my interest in potential medical trials known. If there is ever a chance that there may be a future treatment and/ or cure is something we can all hope for.
I have become far more aware of general eye health however and try to maintain a healthy intake of vitamins and wear sunglasses as and when I need to, to protect my eyes from light.
Have you experienced any positives during your sight loss journey?
I spent 3-4 years travelling and working in Australia, a year in New Zealand with stints backpacking in Fiji, Cambodia, and China. I was forced to move back to the UK in December 2019, just before the international borders closed in New Zealand due to Covid. I was fortunate enough to have a fabulous job in New Zealand, which ultimately started my burgeoning travel career.
How has the condition impacted your life?
Losing my right to have a driver’s licence was the biggest and most recent hurdle. Being restricted in what jobs I can take, being reliant entirely on public transport. I have found since moving to Edinburgh for university that my work opportunities have improved massively. I try to overcome hurdles as and when they arise, and tackle them, in a way I feel comfortable with.
One decision I had to make was to not go ahead with my Canadian work and holiday visa; I was acutely aware of my eyesight deterioration and decided it was best to return to the UK and see my consultant again.
What have been the biggest challenges you've faced since having this condition?
In most recent times, the biggest challenges have been returning to university, and completing my master’s degree. I am currently at the dissertation stage and should be fully completed by July 2022.
I spent so long in some form of denial, ignoring the diagnosis as it didn’t affect me much until about 2017, I have spent a long time trying to overcome my denial. It has led to periods of time where I really felt quite hopeless and depressed – one challenge I really had to overcome was reaching out and asking for help when I really needed it. The sudden deterioration, combined with losing my rights to live and work in New Zealand, just before Covid struck all lead me down a rabbit hole.
Discussing the condition with friends and family is always an emotional struggle, so much so only my closest friends and family are aware of my situation – with my friends most that do know have chronic conditions themselves so to an extent they understand. Building a safety net for myself has been an absolute saviour for me and I don’t know where I’d be without those friends. Regarding family, some can be very judgemental and have a lack of understanding or sympathy, so I have played cards slightly closer to my chest regarding them.
Work is also a challenge at times – at this current time I have a manager who is understanding and supportive, but I am acutely aware this isn’t always the case for many.
What have you learnt about yourself through having this condition?
I have learned that I am far stronger than I ever thought I was, the fear of sight loss was so overwhelming at one point, it led me to denial. If anything, it has increased my stubbornness and reluctance to talk to anyone about what I am going through, which is something I am still working on. Two years ago, I would have never been able to sit here, and write this blog post for sure. I cannot wait to take the reins on my own life again and travel (when we are allowed to!).
What would you like others to know about your condition?
Like any retinal disease or form of sight loss, there is a spectrum. Not everyone will suffer from the same symptoms, or the same level of severity. While I may be registered as legally visually impaired, I do still have some scope of vision which allows me a normal life to an extent.
Visually impaired people can still travel on their own – can go backpacking if they wish! Visually impaired and blind people can still work, and for the most part do anything and everything a fully sighted person can do.
Do you have any advice for newly diagnosed people?
The first thing I did, was think the worst! Then I went into denial, ignoring the facts and really didn’t face up to my diagnosis until about three or four years ago now when I was living in New Zealand and noticed a deterioration in my peripheral vision and general eyesight.
I always say to people who have contacted me on my Instagram @justablindishbumble_ not to be afraid to ask questions. I always find my optometrist the most helpful, more so than my consultants. Generally, the online sight loss communities on social media platforms are incredibly helpful and supportive, so don’t be afraid to reach out online. The help available now, is something that didn’t even exist when I was initially diagnosed.
I have found support through RNIB England, RNIB Scotland, Sight Scotland and the charity Scope who were incredibly helpful with building my confidence when I started looking for work again after I received my visual impairment diagnosis.