Normality or Keratoconus?
Why not both?
Most of the time I like to pretend that I am normal but a few facts give me away:
- I have never met anyone with eyesight worse than mine
- I can drive a car but will rarely do so after dark
- I know from memory the first 3 lines of my optician’s letter chart
When I was first diagnosed with keratoconus, aged 14, I was given glasses. This surprising discovery caused huge queues at the opticians as I had only popped in for a routine check-up. Unfortunately like most teenagers I was very self-conscious about my appearance and did not plan to wear them. Instead I would wear my glasses propped on top of my head or hung from the front of my school jumper. As you would expect they got lost and broken frequently (even run over by a dump truck once!) and I was on first name terms with all the staff at my local opticians. I effectively tried to refuse the keratoconus by pretending it didn’t exist and determinedly resumed ‘normality’.
Was I winning the battle against keratoconus?
No. I was not. Aged 18 I went off to university, still too self-conscious to wear glasses most of the time. It became clear that there was a problem as, even with glasses, I read academic texts increasingly slowly and my friends started a game to see who could pass by closest on campus without me noticing. Of course I was complicit as the judge. More dangerously though I found I would lose my friends on nights out and would befriend total strangers in a bid to pass time until someone familiar found me again. It was clearly time for a new tactic: contact lenses.
As I suspect many people reading this will know, we keratoconus suffers are complicated. We have complex eyes and therefore fitting us with contact lenses is accordingly complicated. I have tried countless fits of lens, a couple of different styles and even (briefly) tried wearing 4 at once. Thanks to the expertise and great perseverance of a specialist I can report partial success: the left eye sees beautifully – it’s amazing to rediscover what the world should look like; meanwhile my right eye has been abandoned as impossible to fit. Nevertheless, contact lenses became a good solution to nights out as they do enable me to see in the dark at last.
This might have been the end of the story. Contact lenses allowed me to see by night and I wore glasses by day (due to a mix of desperation and the increased confidence of maturity). However, ever since being diagnosed with keratoconus I was aware that my eyesight was steadily deteriorating. It was hoped that my keratoconus would stop progressing in my early 20s, as is sometimes the case, but it didn’t. I was not remotely surprised by this. As you may have gathered, ever since the age of 14, I had never had any good news from any optical specialist. The solution, apparently, is crosslinking.
On a scale of ‘one’ to ‘very disruptive’ crosslinking rates quite highly. It is a painful procedure at first. I also had severely reduced eyesight for a few months after each operation. Initially I couldn’t even see the optician’s letter board and I once greeted a total stranger in the street having mistaken her for my mother (with whom I am actually very close). Boredom was also a significant issue as I was off work and then couldn’t read books, watch television, or drive in order to see friends instead.
In February 2013 I had my first crosslinking operation on my left eye. I then spent the summer of 2013 wondering whether the subsequent degeneration was due to the keratoconus or crosslinking. I still didn’t know the answer by November, when my right eye was crosslinked anyway as the risk of not getting it done was too great. In the following April 2014 my left eye was operated on once more. It takes a whole year to be confident of the outcome and so by April 2015 I will know whether it has all been successful.
By the time this triplicate saga was over I decided to write a guide for the benefit of anyone else who has to undergo crosslinking. The trouble is that as crosslinking is a relatively new medical procedure, there aren’t robust statistics yet to tell prospective patients quite what to expect. There certainly isn’t advice on the un-medical aspects such as how to entertain yourself while enduring post-operation-blindness. My plan was to pull together the experiences of lots of people who have also had the procedure so that future patients could be better prepared for their own operations. This website is now live should you wish to visit or even contribute.
You are NOT alone
However, in putting the site together, something else happened. I read the stories of other keratoconus sufferers and realised I was not alone.
LOADS of people out there also struggle to see in the dark and to recognise their friends in crowded bars. There are a great many people out there equally frustrated, equally affected, but most importantly equally willing to offer support. So while it’s still true that I’ve never met anyone with eyes as bad as mine, I now know that this is completely normal.
No one with keratoconus need feel alone-join the biggest community online KeratoconusGB on Facebook, Twitter @KeratoconusGB and Pinterest
One thought on “Keratoconus- my story by Clare, UK, CXL & more”
Thanks for sharing your story, Clare. I, too, had bilateral CXL (epi-off) and can relate to the pain and “blindness” and I can’t take pain meds (also had both eyes done at once as I had to travel)! I visited your great website and appreciate you sharing your experiencing with epi-on CXL failing. It doesn’t surprise me in all honesty and is a huge problem in the US where CXL is cash only (not FDA-approved so insurance won’t cover) and people often go that route. Researches in Italy replicated the epi-on procedure and found the efficacy rate to be 33%. I had the journal article which shows their findings, but it’s mysteriously disappeared from PubMed (collection of medical journal articles provided by the NIH in the US). Well, that doesn’t surprise me, either. Anyway, I’m 1.5 yrs post-CXL and still holding (and got vision back), so I think you’ll be okay now and then we have to see how long CXL really last for, but I keep showing regression per my topographies, so fingers crossed for all CXLers. 🙂
Take good care,