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Around the age of 15/16 I was diagnosed with keratoconus. I was a glasses wearer, but I was really struggling to see anything in much detail. Trying to see the board at school was tough, even close up reading became a challenge. I spent most of my GCSE years squinting, much to my embarrassment. None of my friends had the same difficulties that I had. My Mom requested large print for my exams, and although at the time I felt pretty mortified by it, in hindsight the larger font and extra time was a big help – thank you Mom…..

That Summer, I was given rigid gas permeable lenses to try. I’ve always been very sensitive about anyone going near my eyes (even now at the age of 30, during a regular check up at the eye hospital it can be a challenge!), so someone putting these uncomfortable, foreign objects in my eyes was quite the ordeal. Especially considering the way I was taught to remove them was with a mini plunger – terrifying! Regardless, due to the steep improvement in vision with these RGP lenses, I persevered, and eventually got used to them. I even got used to wearing the single lens if one of my eyes was giving me some grief. My vision had improved and my confidence was up.

However, it wasn’t all good times in the coming years. I learnt the hard way that rubbing your eyes can make your vision worse (I haven’t done that now for 13 years and counting…..), I was given new RGP lenses which would prioritise comfort rather than sight, even having to change to piggyback lenses in one of my eyes as it couldn’t cope with just the RGP anymore, and I was told on a few occasions that my condition was worsening of its own accord.  The lenses themselves could be quite uncomfortable at times, and the slightest speck of dust could often send me into full on tears! And all this time being a young adult trying to navigate A-Levels and then university, I didn’t really listen to any advice I was being given, and I just got frustrated and angry at my hospital appointments. I wonder if the feeling may have been mutual from the hospital however, as I was constantly asking for replacement contact lenses due to them flicking out. Unfortunately when you’re experiencing the uni lifestyle of bars and nightclubs, the dehydration from a night out means that all I needed is a stray hand in and around my eye to make my contact lens flick out. There goes another payment (sorry Mom!) and many weeks waiting for the new lens to arrive…..

Fast forward to adult life in a full time employment at the age of 25 ,and I passed my driving test. I was always nervous about driving – I didn’t always have confidence in my sight (regardless of whether I could read the required line on the eye chart or not) and thought that it might affect my driving ability. After a few years of having lessons on and off, I finally booked a test. Weirdly the thing I was most nervous about on the day wasn’t actually the driving, but reading the reg plate in the car park! 

I feel that this is the point where my outlook changed. I could drive, and once I got my first car, I suddenly had way more opportunities in my life that were not there previously, in particular for work and travel. Now that I had this freedom, I really did not want to lose it. I started to take more care in my day-to-day life – less wear time with the contact lenses where possible, more time and care with cleaning and storing the lenses, I even started to wear Edgar Davids-esque protective goggles for sport. I didn’t care if I got the odd comment – I needed good eye health now more than ever. 

During a regular eye check-up at the hospital, I was told once again that my condition had deteriorated, and that once again, I should undergo cross linking to stop the condition from getting any worse. This operation is something that I had been told about on a few occasions previously. However, with my lack of affection of anyone or anything going near my eyes, as well as turning a bit of a blind eye to my condition in years gone by, I had always ignored the suggestion. This time though, I felt like I had something that I wanted to preserve – my eyesight for driving. I reluctantly agreed to be put forward for cross linking (under the condition of being under general anaesthetic, you can touch my eyes but I don’t want to be awake to see it!), and to my surprise within two months I was in hospital having the operation. I have written a piece previously about this operation, link as follows:

Before my operation, I was very nervous and I felt like I needed reassurance from somewhere. For many years, my Mom had been in contact with the West Midlands Keratoconus Group, even going to a few of the meet ups in Birmingham. Although her previous suggestions for me to join had fallen on deaf ears, this time I decided to join the latest Zoom call. It was an extremely eye-opening experience. Not only was I not alone with some of my experiences, they were in fact commonplace. Finally I had met some other people who were also fed up of the question ‘why can’t you wear glasses?’  Some of the members really had some extraordinary stories to tell which dated back decades, and it quickly became clear to me that some of my own annoyances in the past needed to be put into perspective a little more. On the call there were others who had gone through the cross linking experiences, and they proved incredibly helpful to get in contact with both before and after my procedure. 

Over 4 years on and I continue to join the Zoom calls and go to the in-person meets when I can. Because of the group, I have learnt about many other types of procedures/contact lenses/eyes drops/helpful practices etc which I never knew existed. Thanks to the group, I learnt about mini scleral lenses. At one of my contact lens appointments, I pushed for me to try these out. I have now been wearing mini scleral lenses for over a year, and the vision and comfort that they have given me so far has been fantastic.

At these meetings/on these Zoom calls, I hear of worried parents whose children are struggling and they don’t want to know about their condition. I find it quite humorous as the stories often parallel my own experiences, but I also will these young adults to step forward, talk about their condition and learn from others. Perhaps they also need their own eureka moment like I did when it came to protecting my vision for driving, or perhaps they can read something like my story and see that there is help out there if you ask for it.