Every November 10th, World Keratoconus Day brings attention to a rare and challenging eye condition that can alter life in ways few would imagine. As someone living with keratoconus, this day is an opportunity to not only share my story but also to help others understand the reality of life with this progressive eye disease, as well as the challenges and resilience it calls for.
Living with a visual impairment like keratoconus can be especially challenging for young people. This condition often hits during adolescence or young adulthood – a pivotal time when self-image, confidence, and independence are all being shaped. For me, being diagnosed at 15, just before my GCSEs, was a defining experience. It is generally a time when academic performance matters so much, and self-confidence is already fragile. As my vision deteriorated rapidly at this crucial point in my life, and I had to miss a lot of school due to endless eye appointments and an operation, I wasn’t only worried about the physical implications but also about how it would impact my academic performance, social life, and future prospects.
The diagnosis was followed by a treatment called corneal collagen cross-linking (CXL), a procedure meant to halt the progression of keratoconus. While CXL can stop the corneal thinning from worsening, it can’t restore the vision that’s already lost, so even with treatment, my sight remained compromised. The impact of this experience on my GCSEs and my self-confidence was significant. At a time when I should have been focused on my studies and friends, I was grappling with a diagnosis that left me feeling uncertain about my future. My self-esteem took a hit as I struggled to adjust to a life where seeing clearly was no longer possible.
Since then, my journey has been shaped by both the limitations and resilience that come with living with keratoconus. Now, years later and after trying several contact lens options over the years, I rely on scleral contact lenses to see, yet even these aren’t a perfect fix. The lenses give me a semblance of functional vision, but they come with their own set of daily challenges. They’re uncomfortable, often painful after a few hours, and sometimes feel like sandpaper against my corneas. I have never got used to the feel of them or the daily strain they have on my day to day life. My right eye is permanently distorted, and my left eye remains blurred without the lenses, forcing me to squint to see even the basics. Without them, navigating the world is almost impossible – tasks as simple as recognising faces or watching the TV are out of reach.
Living with keratoconus affects more than just how I see the world; it changes how I navigate it. Each day brings its own set of challenges. I wrote in a previous blog about how this visual impairment has long-term life impacts, affecting things many people take for granted (link at the end of this blog.) For every social interaction, every trip to the shops, and even every walk down the street, I’m reminded that I see the world differently, with more effort, and often with more anxiety. Sometimes I wonder how it would feel to have normal vision again. To be able to wake up in the morning and see the world without any blur. To be able to read a book or watch a film/TV programme without any squinting. To be able to drive at night without any worry or stress, and to be able to function at my job and work normally without having to regularly self-administer eye drops and squint at the screen.
Visual impairments are often misunderstood, and for those of us with conditions that aren’t correctable with standard glasses, there’s a lack of understanding from the general public. Many people don’t know about keratoconus, or they’ve only vaguely heard about it, which is part of why World Keratoconus Day is so important. Living with keratoconus isn’t just a physical challenge; it’s an emotional and social one, too. For me, lenses are a lifeline, but they are also a daily discomfort and a reminder that my vision isn’t the same as everyone else’s.
Awareness is essential, not only for people to gain a better understanding of the condition but also for others who might be living with undiagnosed keratoconus. The symptoms – blurred vision, double vision, sensitivity to light – can be easy to misattribute to other causes. Often, it’s not until the condition progresses significantly that people seek help. By raising awareness, we can help people recognise the signs earlier, possibly slowing the progression through early interventions.
I believe in science and its power to transform lives. With each year that passes, advancements in medical technology offer new possibilities for people living with conditions like keratoconus. This belief in science fuels my hope for a better future, one where a breakthrough treatment or even a cure could make clear vision possible. I hold onto the possibility that researchers will continue to unlock the secrets of the cornea, developing solutions that can relieve the pain, discomfort, and limitations keratoconus brings. Science has already brought relatively new treatments like corneal collagen crosslinking, which successfully halted my keratoconus progression, and I trust it will continue to progress. Until that day comes, I’ll keep supporting the journey of awareness and research, knowing that science has the potential to uncover something that will benefit those with this debilitating visual impairment.
For my other blogs about living with this eye disease, please see below:
Keratoconus is an eye disease in which the cornea starts to become an irregular cone-like shape. This means that it can no longer accurately focus light onto the retina at the back of the eye and when this happens, the vision is distorted and blurred.
Diagnosed aged 15 a few months before my GCSEs, a decade on and it hasn’t got any easier to live with every day. Five key areas the condition affects in my day to day life are social situations, work, travelling, meaningful activities and emotions. By no means are these areas exhaustive, but I hope it provides some insight into coping with this often disabling and debilitating condition.
Social impacts
Alongside the practical impacts a visual impairment has, it also has a profound social impact on my daily life. Due to my right eye not seeing any level of functional vision without the aid of a lens, it often fails to work together with my left eye. This results in a drifting eye, which causes me a lot of anxiety and self-consciousness within social situations. Part of my lack of confidence socially is undoubtedly because of my eyes not working together, and I’ve tended to seek to avoid eye contact when I’m not wearing my lenses solely because of this. This can feel completely soul destroying when you’re always wanting to be sociable. Facial expressions are often difficult to see clearly, particularly from across a room. It is very hard to distinguish facial features without squinting, making it nearly impossible to read people and their emotions adequately. Decreased visual acuity can restrict the ability to choose appropriate initiations and interactions. Additionally, the ability to process and act upon other verbal information can be impacted. Having a visual handicap can also lead to some potentially challenging social situations, such as inability to recognise someone familiar when out on the street.
Glaucoma, macular degeneration and cataracts are all examples of widely known eye conditions. The fact that keratoconus is more rare and unfamiliar amongst the general population makes it very difficult to explain to others, causing another barrier to being adequately understood. Hardly anyone can truly comprehend the level of disability I face partly because they haven’t heard of it. Perceptions and pre-conceived connotations also exist surrounding being partially sighted, of having a white cane and/or guide dog. When you present as a high functioning person with a driving licence who can get on with tasks fairly normally, it remains unnoticeable and perhaps underestimated. Particularly when my eyes look completely healthy like the average person’s, my daily struggles are undetected by everyone around me.
Additionally, keratoconus starts in adolescence or early adulthood whereas the other diseases are associated with onset at an older age. We tend to assume that sight loss is a common symptom of getting older, rather than beginning in adolescence. Misunderstandings, perhaps because of this, are all too common; well meaning people remarking ‘can’t you just wear glasses?’, for instance, or assuming I just have a mild case of shortsightedness when I have mentioned I have a problem with my vision. If only!
Corneal topography scans and how it detects keratoconus
A digital age
Direct correlations exist between the level of vision someone has and productivity and efficiency at work. Vision difficulties at a computer can extend necessary work time, cause increased mistakes and result in more breaks required to lessen discomfort from eye strain.
Since COVID-19, we have all relied on technology a lot more to connect with people; friends and family particularly during the era of lockdowns, as well as work colleagues, which has many advantages. Working on the computer has become the societal norm, which, albeit it coming with hosts of benefits, poses a host of obstacles for people with visual impairments. Opportunities also arise, with the option of hybrid work becoming all the more common. Unfortunately, being a temporary employee means that I don’t have access to hybrid work yet. Long term, this way of working is a strong preference. Not only would it give my eyes a break and not cause so much strain every day, it would also aid my executive functioning and reduce the fatigue that comes with the five day a week daily commute, especially with being neurodivergent and thus being more susceptible to overwhelm and burnout.
Driving
Just as the days were getting shorter and colder, I joined the HMCTS Coventry court team in December. Driving is a very pleasurable activity for me, especially when I listen to my favourite music. But I see a range of starbursts and distorted lights, and the headlights from other cars produce a significant amount of glare because of the increased sensitivity to light that I experience.
Keratoconus distortion in the dark (this is pretty accurate to what without a lens in my right eye is like – although I always ensure I adequately correct my sight with a lens before driving in the dark!)
Regardless of ensuring I’m always safe to drive in the dark with vision correction, I am still nervous and hesitant to do so unless absolutely necessary, due to the reduced visibility on the roads. With a decreased ability to recognise road signs up close and at a distance, anticipate manoeuvres and and react to other road users quickly, I’m incredibly lucky and grateful that I have one eye that meets the standard to drive with the aid of a lens.
In the workplace
Uncorrected vision can decrease employee performance by as much as 20%, with poorer job security and salary unequal to efforts and achievement.
Taking up a full-time Admin Officer position perhaps isn’t the most ideal position for someone with visual and chronic dry eye difficulties. Especially since this wasn’t the situation I was expecting myself to be in this year, I have found the transition to working five days a week difficult. Full-time work is tiring for everyone, but I have to face and consider another level of difficulty. Education was also more challenging for similar reasons, although I had a lot more flexibility as a student so working on the computer seemed a lot more manageable, as it was for short bursts at a time. My laptop is permanently dimmer to reduce eye strain – an example of one of the little adjustments I have done to help myself at home!
Heating has proved a major problem for me in the office. Obviously, it is important to keep warm but it has always really aggravated my eyes (same with air conditioning.) Staring at a screen all day in a dry, humid environment causes me significant ocular discomfort. When working on a computer, you unconsciously widen your eyes, which results in a greater surface area for the tears to evaporate. Blinking is also done less often as you focus on the screen. Considering that my eyes also don’t close properly due to the conical shape of the corneas, it is perhaps not surprising that my eyes cause such a problem with pain. In my era of admin work, my Eyebag has never been used so consistently! (A reusable warm eye compress that provides temporary relief from dry eyes.)
Scleral lenses are meant to moisten and help dry eyes, as they are filled with saline solution. They do initially provide this relief, before reverting to becoming foggy, dry and uncomfortable after a few hours in the office. When this happens, they become intolerable and I need to take them out for a bit to give my eyes a break. The problem is, I cannot see anything on the screen without them, without really having to squint. It is nearly impossible to fulfil my role properly in this scenario, as my right eye distortion is very pronounced and significant without the aid of the scleral lenses. Thus, I am stuck in a paradoxical and complicated situation of sometimes being unable to wear lenses and subsequently having to squint and struggling to see anything clearly, or my lenses being increasingly uncomfortable, trapping me in a seemingly never ending problem. I often have to remove and reapply them during the working day, which takes a bit of time and disrupts my workflow. Self-consciousness also strikes me when I have to get up and quietly go to do this in the disabled toilet, the only private space suitable enough to do it. Not all disabilities are visible and I have a right to a discrete place to regain and maximise my comfort, but it still makes me feel awkward. Probably, though, my colleagues are too busy with what they’re doing to notice me quickly disappearing and reappearing with my bag!
Travelling
Obviously, having a visual impairment makes travelling a lot more complicated. On a day to day basis, there are a lot of additional things I need to remember to carry with me at all times; contact lens case, two different solutions, lens inserter/plunger, lens stand, eye drops. As someone with dyspraxia, my short term memory can be poor. To overcome this, I often have to check and physically go through my bag several times before I’m content enough to leave the house. Even then, I can forget something I need for my eyes; on more than one occasion, I’ve forgotten my homemade stand I use to put my lenses in, and I can’t insert them without it, meaning I have to struggle without them for the rest of the day! The impact of trying to compensate for my dodgy short term memory on my general executive functioning is exhausting.
When going abroad, at airports the liquid restrictions are in place. With my other toiletries together with my eye things, I can’t fit it all in one small plastic bag. Additionally, the air pressure means it is unadvisable to wear lenses on a flight anyway. Not to mention the fact lenses in hot weather don’t really work for me! Cumulatively, all of these factors have meant I have so far gone abroad without them. Luckily, I am in a privileged position where I can manage without them for a few days, but it still makes it a lot more difficult to get around. The thought of travelling abroad alone excites me, and this is something I am very enthusiastic to do more of. One of the things that has discouraged me from solo travel before is my visual impairment. Being without contact lenses has left me unable to see landmarks clearly, but more importantly departure boards, road signs and platform information. Clearly, when someone else with a good level of vision is with me, that doesn’t matter – but I don’t want to always have to rely on someone else to read signs, displays and information for me, even when travelling with them!
Accurate depiction. My left eye (middle) and my right eye (right) without lenses
Meaningful activities
Most of the time, I am still able to enjoy the activities that matter to me despite my eye problem, but I often have to make adjustments to get the most out of them.
One of the best things for me in my life, both for my physical and mental wellbeing, is running. My weekly running club on a Wednesday evening is one of the absolute highlights of my week – even when I don’t feel like going and I have to drag myself out the door, and even when I find it difficult during the run itself, I come back buzzing on a real runner’s high! It also means I am more physically tired and able to relax for the rest of the evening. Through the winter months, running in the dark is no doubt a hazard for everyone. Consideration is required even more so in alleyways and unlit roads, so using a light is advisable which I have just started to make use of. While running, I am hesitant to use my lenses because of the possibility of getting sweat or dust in my eyes, which could potentially cause an eye infection, so I generally don’t wear them while running with the club. This means the dark pavements are even more dangerous for me, as I can’t see where I’m putting my feet as clearly. I am sometimes slightly apprehensive due to the possibility of injuring myself by failing to see a hazard below or in front of me.
Running in the dark
Another enjoyable activity is immersing myself in nature. It is the mindfulness in my life; the calm amongst the chaos in my mind. Nothing soothes my soul more than walking through the woods on a sunny day, walking round a lake, a canal or through open fields and listening to the natural sounds around me. Even better in the spring when the daffodils or bluebells are out! Frequently, I miss the chance of seeing wildlife because of my sight. You need decent long distance vision to spot the quick flash of blue from a kingfisher along a riverbank, for example; I have seen a kingfisher a few times before, but only when someone has pointed it out to me and showed me where to look (zooming in on their phone so I can have a glimpse!) Luckily, I have had some amazing encounters with wildlife up close that I’ve seen, although it frustrates me when I miss something because of my vision.
Watching dolphins in the Moray Firth is probably my favourite wildlife encounter I’ve had so far. I could see them up close despite my sight loss
Watching TV and reading can also pose a major problem. After a long day of needing lenses to function at work, my eyes often feel dry and tired in the evening, so I don’t always want to go through the fiddly process yet again when I want to relax. Instead, I often resort to watching TV programmes and films on my laptop or phone which I can move right up close to my face, rather than my TV which is further away, so I don’t have to really squint to be able to see. Notably, the TV in my room doesn’t tend to get switched on unless I have to watch something live, which requires my lenses. It feels like a shame!
Emotional impact
Rates of psychiatric morbidity in keratoconus patients compared to the overall population are documented to be staggering, due to the cascade of problems associated with keratoconus.
Living with a long term health condition, disability or impairment has an enormous psychosocial impact. It is tough – there is no disputing that. Some days are stormy when all I can notice is my visual impairment and I mourn for the good vision I had before my diagnosis in 2013. Missing a couple of crucial weeks of school just before my GCSEs commenced as I recovered from CXL might have affected my results; it is hard to quantify or know for sure how much it impacted my GCSE studies and examination results, but it was certainly traumatic to have to go through aged 15, at a crucial stage in my life. Looking back at my rapidly deteriorating sight loss as a teenager, it was scary for me partly because I didn’t understand the nature of the condition then.
Unusually, I had actually heard the term ‘keratoconus’ before, and it was mentioned to me as a possibility a few years before I was officially diagnosed, due to my dad having the same condition. Fortunately for him though, his case is mild and he has always been able to stick to wearing glasses. Prior to getting diagnosed and when it was briefly mentioned to me in passing, by an optician who, upon noticing my lazy eye, clocked that there was a history of the disease in my family, I wrongly assumed that, if it was the case I had a named condition, it would just mean wearing glasses most of the time like my dad, a minor inconvenience that I could easily manage like him. If only that were the case! Imagine my shock when I first discovered I couldn’t read the top letter of the eye chart, realising my right eye was completely distorted and learning that it was a progressive disease!
Grief isn’t always just about missing a person – you can grieve for anything you have lost, and normal vision is something I definitely often grieve for and yearn to have back, often reminiscing and attempting to remember what it is like to have no visual defects.
Keratoconus summed up! I have ‘sight’ but it is completely distorted in one eye and slightly blurry/distorted in the other
In certain situations I seem to notice my impairment more than other circumstances. For example, because of silently struggling with sore eyes, distorted vision and lenses daily at work, it has been more noticeable in this situation recently as opposed to when I’m relaxed, engaging in something I enjoy doing at home.
My right eye is still moderately distorted even with the lens due to how advanced it is, while my left eye can be corrected to 20/20. Together, they provide me with a functional level of sight. Whilst I’m grateful for this, hard medical contact lenses are a real hassle and a fiddle to put in, as well as being time consuming. These lenses are filled to the brim with solution until they are almost overflowing. If the tiniest drop spills while inserting, it produces a bubble in the lens which means you have to take it out, repeat all the disinfecting/cleaning process and reinsert it again. If the lens goes in the wrong place, it can cause discomfort and pain. The mere fact of being reliant on these often uncomfortable lenses to provide a level of functional vision is hard and can be draining.
A blessing and a curse – a scleral lens
Conversely, there are days where I don’t notice it so often. Despite always having to think about it and deal with the condition, I don’t let it spoil my day. Especially when I’m busy doing things that make me feel good, I can almost forget about the daily battle. I need to cling on to these days and remember that they are more frequent than the hard days where it all feels overwhelming.
Interestingly, a recent research study comparison with other ocular diseases revealed worse emotional wellbeing scores among individuals with keratoconus compared with patients with age-related macular degeneration, diabetic macular edema and retinal vein occlusion, despite better average visual acuity noted among patients with keratoconus. This is because it strikes early in life, on young people who are considerably active and in their primary income-earning years, thus affecting the trajectory of life to a greater degree. Inevitably, this affects quality of life and explains increased anxiety and reactivity to stressful situations.
Anxiety and uncertainty about the future
Keratoconus is progressive, meaning it can continue to worsen. Although it is not a blinding disease, it can lead to legal blindness in severe cases. As aforementioned, just before my GCSEs I had a relatively new procedure with the aim of halting the progression. A decade on, corneal collagen cross linking (CXL) has successfully stabilised the disease, meaning it is very unlikely it will progress any further.
Early detection is critical to preserve vision and long-term quality of life. While cross-liking might not improve visual acuity, it stabilises the condition and gives hope of avoiding further progression and a future transplant. Despite getting repeated reassurance at hospital appointments, I still agonise over the fact it is a deteriorating disease, mainly in young people. I think there will always be that seed of doubt and worry in my mind due to the progressive nature of it, at least until I get to the age where it is known to stabilise.
Will I always be able to drive and retain my licence for as long as possible? This question often hangs over me. Initially, my vision presented a barrier to learning to drive; I know the pain of being unable to because of how poor my vision is without lenses, and now I know how much I love the independence and freedom of having my own car, not having to rely on unreliable public transport. Quality of life is known to be reduced for individuals with keratoconus. For a substantial plurality this declines further over time as new challenges emerge, particularly when getting older.
Very grateful to have my own wheels!
People who wear contact lenses are more susceptible to eye infections. It makes sense, and I constantly do everything I can to minimise my risk by following the advice meticulously, which means the process of inserting and removing them takes a bit of time. Sometimes, however, they are unavoidable no matter how careful you are. Horror stories certainly exist on the internet, and I’ve read a fair few involving contact lens wearers!
Having a rare disease makes the research scant compared with other visual conditions, meaning less chance of revolutionary treatments – this is why eye research charities are so important.
Clinging onto hope for some groundbreaking treatment/cure during my lifetime. In the meantime, I am thankful for the eye care professionals, my family and friends who are helping me while living with this disabling condition. Shoutout to my fellow KC sufferers. We are all warriors!
How I feel. As supportive as my family and friends are, no one else can tell how distorted my vision is, and just how much it complicates my life
Previous attempts at contact lenses proved a disaster for me; the lowest point came when my RGP lens got stuck to my eye due to the surface being so dry, and scratching my cornea in the process – requiring a prompt visit to the emergency eye department of an eye hospital in Birmingham to get antibiotics. Unsurprisingly, this occasion was the final straw after a culmination of built up frustration and struggles with significant discomfort over an extended period of time due to my dry eyes, and I vowed to never wear any lenses again as I convinced myself they were too difficult and I couldn’t tolerate them.
Fast forward a few years and I genuinely think my keratoconus presents the biggest challenge I have in my life now. Not many people know the true extent of what it is like; it is quite disabling to not have any vision in one eye, the world just being a complete distortion. Luckily I have a decent amount of vision in my other eye to compensate, which meets the standard for driving with the use of glasses, but even my good eye isn’t perfect. I still have to squint to be able to see from a distance, to watch the TV, to be able to see someone’s face properly without double vision, and to read any text. Due to my right eye not working, it tends to drift and not focus on what I’m trying to look at, which makes me feel very self conscious! It is definitely a life- limiting disability which complicates my life in so many ways.
Since I’m an adult now, and I like to think my resilience to challenges has developed even more since I was a teenager and initially introduced to them, I decided to give the world of contact lenses another go because I have been aware I’m missing out on crucial, life changing vision by not having them, and I also thought it may just make my life a little easier if I could find the right type/fit. Initially, my optometrist and I agreed to try one for my worst eye first, to see if I could deal with it – then consider the possibility of getting one for my other eye once I’ve adapted to one.
What are scleral lenses?
Earlier this month, I received my new scleral lens. Scleral lenses are hard, rigid and large in diameter, which rest on the sclera (the white part of the eye) and creates a tear-filled vault over the cornea. The sclera is less sensitive than the corneal tissue (which is one of the most sensitive tissues in the body you have), creating greater comfort than the RGP lenses I tried before because it doesn’t touch the cornea.
Removing the lens with a plunger
The lens bowl is filled to the brim with saline solution that is then applied to the front surface of the eye. This essentially fills in all the warpage of the irregular cone shape in keratoconus, giving a great, engineered front surface of the eye. Because it is filled with saline prior to insertion, scleral lenses are also meant to be a great treatment for dry eyes – it is basically bathing your eye all day in tears!
My experience so far
A week after getting the lens and having built the wear time up gradually to two or three hours, I got a completely coincidental, unrelated bacterial eyelid infection on my good eye, that potentially could have been quite serious. This resulted in me having to get antibiotics from my GP and miss a day of university at the start of term due to a swollen eye that I struggled to open; I don’t have any amount of working vision in the alternative eye, so this meant it was even more of a challenge and when I started practising with the lens again this week, I was doing it from scratch.
By far the most challenging aspect to overcome is the eye’s natural reaction. The function of your eyes is to keep foreign objects out by blinking and pulling away, which makes inserting a large rigid gas permeable lens (or any lens) very challenging. So far, it usually takes me countless of times and at least half a bottle of saline solution to get it in place and without an air bubble, because my eye is doing its natural job of keeping it out! This increases my frustration and nerves each time I fail to put it in, and I also have a tendency to pull away too early when my eye has touched the saline, thinking the lens is in. Currently I am finding this very difficult to judge! I’m hoping it will become easier as I practise every day. Getting it out is also tricky, as I’m still not used to the thought or the motion of putting a plunger in my eye to remove it, but recently I have managed it with fewer attempts compared to insertion. It definitely seems easier than getting it in!
A variety of eye products I use for my lens and eyes in general
Another difficulty is my fine motor skills. With dyspraxia, this means these skills are poorer and I can struggle more with fiddly things involving my hands – fine motor skills definitely present more of a difficulty to me than gross motor skills, another characteristic of dyspraxia. To make insertion easier and eliminate some of these challenges, I have a homemade stand made from a discarded chilli bottle and paintbrush! The inserter plunger is attached to the paintbrush, which allows me to have greater control of my eyelids. Bringing my eye to the lens rather than vise versa definitely saves some of that tricky fine motor work.
Manufactured contact lens stand
Although my vision is by no means perfect even with the scleral lens, it has definitely proved to be transformational and makes a big difference. With it in place, I can actually close my good eye and read text/see a picture with my useless eye which never ceases to amaze me. I have lost count of the number of times I have broken down in tears because of keratoconus, marvelling at how most others can actually see clearly out of both eyes without lenses and thinking how much we all take things for granted. But at least there is hope. So many patients with the disease require corneal grafts, can’t drive, can’t function without lenses at all. That’s not to say it’s not rubbish for me – it really is – but it gives me some perspective and hope.
One thing that is frustrating is the dryness I still seem to experience – as I mentioned, this lens is actually meant to help my dry eye, but every day it seems to feel a bit dry and uncomfortable after a while. Although the comfort is MUCH better than the RGP lenses I once had, I can also still constantly feel it in my eye, when members of the facebook support group I’m on contrast my experience and say they can’t feel it is there. So I have things to discuss with my optometrist next time, and I’m already considering requesting a scleral lens for my better eye as well. I want the maximum level of vision I can get! That is, if the comfort improves and the insertion becomes second nature, which I hope it will soon…
Endless patience, courage and practise is required with keratoconus and contact lenses
World Keratoconus Day (10th November) highlights the importance of fundamental awareness and pioneering research. Without it, improved treatment options and hopefully a cure in the near future wouldn’t be possible. Keratoconus has complicated my life in many ways, including:
Distorted vision
Put simply, my right eye is so distorted to the point I can’t see anything out of it; the world is just one massive blur. My left eye isn’t anywhere near as severe – I can get by with the vision in the one eye day to day, but even then it’s not perfect. I get double and blurry vision, particularly noticeable when I’m concentrating on something such as the TV or looking at directions/signposts. To be able to see the TV clearly, I have to really squint my eyes, shut my useless right eye and tilt my head. This is very frustrating!
Due to my right eye not seeing at all and my left eye having to compensate and do all the work, my rubbish eye tends to drift – it often isn’t aligned with the other eye (especially when I’m tired) which has caused me to feel very self conscious and anxious. It is the reason why I often don’t like photos being taken of me, and why I’ve given up taking selfies! I wish they would work together more, it would give me much more confidence!
My right eye ‘vision’ resembles advanced keratoconus and my left eye, early keratoconus
Dry eyes
This is a big factor of my keratoconus. Due to the bulged shape, the natural tears your eyes normally make can’t reach around the whole eyes. As well as this, my eyes have never shut fully – even while sleeping, which means my eyes regularly dry out at night and I inevitably frequently wake up with very sore eyes, despite applying a considerable amount of ointment every night!
Eye drops and ointment have become part of my life. Having to regularly apply them doesn’t bother me anymore, as it did prior when I was a teenager. I’ve got so used to them over the years, it’s just become a natural thing for me to do and I can’t imagine not having them now – an insane amount of eye drops during the day and ointment before I go to bed. It’s the cost of the prescriptions that bothers me; having dry eyes is really expensive and I didn’t choose it!
Very dry, sore eyes is the reason I can’t tolerate contact lenses. I’ve tried multiple ones and they have just aggravated them further, therefore I don’t bother with them. I wish I could get used to a lens for my right eye as I know I’m missing out on vision, but I never got on with them so I currently don’t wish to pursue lenses unless I have to, although this view may change!
Winter is worse for my eyes – heating really aggravates the dryness and soreness. Heating is a necessity and I love it, but it really doesn’t agree with them! Prolonged computer use also has the same effect.
Endless hospital appointments
Check ups, scans, endless lights being shone in my eyes, drops, vision tests in the Ophthalmology Department of Solihull Hospital – these appointments are the bane of my life. I understand it’s necessary and very important to regularly monitor the disease to ensure that it’s not progressing, but it’s tiresome. On the plus side, it is reassuring to hear that the keratoconus remains stable. Afterwards, I always get a grab bag of wotsits and a coffee to cheer me up. This incentive helps!
Anxiety
On 18th February 2015, I underwent the corneal collagen cross linking procedure to halt the progression of this condition. So far, it has successfully stabilised the keratoconus meaning it hopefully won’t deteriorate my vision further. Despite this, I still have the anxiety of it progressing further to the point where my left eye basically blinds me like my right one has. I fear that my driving licence could be revoked so my independence will be lost. This operation wasn’t pleasant but so far it has been worthwhile. I just hope that it stabilises it forever.
Corneal Collagen Cross Linking (CXL)
Why I consider myself to be lucky
Despite my struggles with this disease, I consider myself to be a very lucky sufferer; I can drive. That’s all I ever wanted.
I know the pain of not being able to drive; I started learning aged 17 like everyone else around me and loved it. I booked my test for January 2017, eager to pass and get my dream car so I could be more independent. It was the winter of 2016 when I got absolutely devastating and life shattering news – my vision wasn’t up to the required standard to drive, so I had to cancel the test. This wasn’t a shock; I’d feared this would happen all along, but it was something I found very difficult to accept regardless, especially since I’d already started to learn and knew how much I enjoyed it. It was horrific to watch my brother learn and pass, when I couldn’t get behind the wheel. I was in a very dark place in my life and was really struggling with the concept of not being able to drive. I couldn’t come to terms with it and move on, I was broken with the prospect.
Eventually, with a lens, I reached the required 20 metre standard and passed. Many months later, miraculously I discovered I could read a number plate from the required distance with glasses with my left eye, as it isn’t nearly as distorted as my right eye. The law states that you only need one eye up to the standard to drive, and I met this. Not having to wear a painful lens to drive makes my life so much easier and better in every way.
On the recent Fight for Sight Community Day I attended in London, there was a discussion about driving. Many other patients and their relatives with keratoconus said they couldn’t drive, and how life limiting it was having to rely on lifts and buses everywhere they went. Even if I found it easy to join in and express myself verbally, I wouldn’t have contributed to this topic as I felt so bad for them. I’d gone through all that and somehow it all turned out great for me. I felt guilty and bad that I was able to and they weren’t and almost certainly never will. It put my life with keratoconus into perspective and made me feel very grateful for what I had and could do. It doesn’t limit me as much as many other sufferers. Nevertheless, it isn’t easy to live with and I’m endlessly praying for a cure!
Passing your driving test is one of the best feelings ever for anyone, but when you’ve gone through a lot to get to that point it makes it even more meaningful.
Before my 17th birthday, I was worried I wasn’t going to be capable of driving. It was one of the things dyspraxic people are said to find too difficult, with most having to learn in an automatic. Too much coordination. I was surprised when I found it no harder than my twin brother and was so pleased when I discovered I could drive a manual car and started having regular lessons. I passed my theory test just after my eighteenth birthday and I was ready for my practical, the next and final step to getting my full licence, being a qualified driver and being on the road unsupervised.
In November 2016 I was in a particularly dark place when I found out I had to cancel my booked January driving test as I didn’t meet the required standard for vision, despite previously believing I was able to read the number plate without a lens. I was really struggling with the prospect of not being able to drive, it felt overwhelmingly tough with every visit to the eye hospital ending with bad/unclear news. I’m surprised I didn’t have a breakdown! Meanwhile my brother was learning and passed his practical test first time, and although I was pleased for him I was really broken inside.
In March 2017, I got an RGP lens. This is, at times, very uncomfortable – it took a while to get used to, and that still didn’t guarantee to get my sight up to the legal requirement. Shortly after my marathon success in April, the lens was a tiny bit more bearable and I got the prescription altered. Although I doubted it all along, I read a registration plate from 20 metres! I think that because I didn’t want the crushing devastation again of thinking I could drive, then not being able to, my mind was preventing me from believing it right up until my first practical driving test in July. I’d practiced a lot along the areas roads and although I felt sick with nerves, I was prepared.
On the whole the first test went really well; I did the manoeuvre perfectly and the general driving was good with only a few faults. Probably due to nerves, I got slightly too close to a car near a roundabout and had to brake quite suddenly. Although I remained calm I kind of knew I’d failed from that point and I was right. I also made the mistake of telling everyone I had the test beforehand, which I now know is never a good idea. It put unneeded added pressure on me to pass, and I had to let everyone know the result afterwards.
The second test was pretty much a nightmare from the start. The preferred parking position threw me, the waiting room was silent and horrible, then I ended up with a particularly unfriendly examiner who took a disliking to me from the start when I was a bit vague. Because I was so nervous and I have a bit of difficulty with processing what people have said sometimes anyway, when he asked me a question I wasn’t expecting I wasn’t sure what to say and said the wrong thing, which he didn’t take too well. I made quite a few silly little minors as I just felt sick throughout the drive, as uncomfortable as you could be on a driving test. On an unfamiliar road, I was going at the speed limit and I didn’t anticipate a sharp bend ahead until too late, so needless to say I failed again. I felt so deflated after my second failure, more so than my first, but I managed to get another test within a couple of weeks exactly.
This was it. I was determined this time would be different. Unless I had to do the reverse bay park, then I would have probably failed! My usual rescue pastilles were there, the same ones I’d used for my previous tests. There seemed to be a more relaxed atmosphere beforehand this time, people chatting and music playing from a radio. There was just a good vibe, the complete opposite of last time. I’m so relieved I ended up with the nicest examiner you could probably get. I had a bit of a nightmare at the beginning with the independent driving, basically not being independent at all as I kept indicating the wrong way and nearly going the wrong way. This never happened before; it was either a particularly dyspraxic moment, or nerves, or likely both. I was convinced I failed on that as she kept having to direct me. I met some idiot on the road who beeped at me for no reason, and she made a lighthearted joke about it which reassured me. Throughout the drive she really made an effort to calm me a bit as I told her I was nervous. She chatted to me about what I was doing, if this was my first test, and a few other things. Something inside me allowed me to blurt out about my other tests and I talked to her quite a lot. I honestly think this made a massive difference. You can’t choose the examiner you get, but it’s a huge help and I was able to drive better than I ever had done before because of it. When I pulled back into the test centre I seriously thought it could have gone either way. When she said not only had I passed but that I’d only made three minors I felt on top of the world; it’s indescribable. Over the moon is an understatement. I knew it, but I found it amazing to hear her say ‘you can drive unsupervised from now on, independently.’ She said she knew how much it meant to me, which I know was her being friendly, but she has no idea about my rollercoaster ride with driving!
Lots of messages poured in throughout the day and I can honestly say I hadn’t felt this happy and relieved for ages. I have my little red car that I’ve dreamed of having for years and it feels surreal. I love the independence of it so much, I now cannot imagine being without my car. I wish I could have known through that awful time that there would be light at the end of the tunnel, that it would all be ok, that I would be able to drive soon. That would have saved me a lot of suffering! I seriously never thought the day would come, what a rollercoaster of a journey it was!
Thank you for the optometrists at the hospital for their patience and not giving up on me.
‘Keratoconus is a condition that affects the cornea, the clear front surface of the eye. The cornea becomes thinner and more cone-shaped over time, instead of having a rounder curve. The change of shape causes blurred and distorted vision in the early stages, whilst in the late stages there can be an increase in blurred and distorted vision, poor night vision, halos and ghosting around lights.’ – (Fight for Sight’s definition.)
I was 15, on holiday in Belgium in the summer of 2013 when I first noticed something was wrong with my eyes. It was when I got lost in the Trench of Death and couldn’t find my family, despite them waving at me from the distance. I also have a vague recollection that my family noticed something was wrong when we went cycling on the Belgian countryside roads – dangerously, I couldn’t see cars on the roads until the last minute.
Reluctantly, I decided to go to my local opticians to have an eye test. I didn’t expect not to be able to read the first big letter of the first line on the eye chart with one eye – my vision was completely distorted. Further and seemingly endless tests at the hospital revealed that something was very wrong. Shocked, I received my diagnosis of Keratoconus.
Everything made sense then. I went through several pairs of glasses throughout my life and I always said they made no difference. My short sightedness and ‘lazy eye’ were constantly examined, but opticians failed to notice anything serious – presumably because the disease was in the very early stages and hadn’t developed properly to be able to tell. I had heard of keratoconus before, as my dad also has it but gets by with glasses. He isn’t technically blind in one eye like me; instead he has a milder version.
A long and agonising battle with RGP lenses awaited me, made more complicated by the fact I have severe dry and sore eyes (a symptom of keratoconus and due to the fact my eyes don’t properly close.) The uncertainty of whether or not I’d ever be able to drive worried me. Would I ever get my driving licence? Would my life opportunities and overall quality of life be affected negatively by this condition?
Imogen’s blog 