Keratoconus, my story by Marco

I had been mailing Rae from the Keratoconus GB Facebook Page to thank them for all the help and info they and the community had provided me with over the last months since being diagnosed with keratoconus. In early 2012 I got diagnosed with Keratoconus, in my case, there seems to be 2 things going on here, I had developed KC  in my mid-thirties, which is a little rare, and on top of that I seemed to have developed a “nipple” cone, which again, according to my treatment specialists is fairly rare as well.

However there seemed to be another “rare” thing, in that I deduced form a comment I received from Rae along the lines of, “you do realise that your journey to Diagnosis was a pretty rough one”

Was it?

Yes, in my head it was, it wasn’t easy at all.  But I didn’t realise that, again, this journey itself had been “fairly rare” as well.  I mean we all have a tough one on that, right?

How did we come to talk about this in the first place though?

I had sent a Rae a link to my blog about my life with Keratoconus, where I talked about the start of 8 months of sick leave in August 2011, as I had started developing vision issues as long ago as the November before that I guess, If not longer.


The problem had been that it seemed the issue was not taken very seriously from the start with August 2011 becoming the start of a journey that took me through ups and downs from one Specialist to another and so on. Over time I hit a small bout of depression due to the lack of progress and sitting home for months on end, not being able to do anything like read or watch TV, and of course my sight just getting worse on top of that.

One of the things my GP suggested at that point was to write it all up (obviously not that easy with sight problems, but everyone here reading this must have found tricks to work around this I guess… )

In any case, I did write it up, and stored it away in “the Cloud” and stopped writing things up once things got diagnosed and life became manageable again, and more importantly, better.

I hadn’t really thought of it for months until I had a chat with a friend of mine who suggested that I do something with it, i.e. place it on a blog, as I had been telling her about my journey, and about my frustration about the fact that yes, thankfully there is a lot of info on what KC is on the net, but not necessarily much about what people that do have KC are going through.

So, she said, write up both journeys, the one leading up to Diagnosis, and the one after… and I did, and you know what, it was very therapeutic, so far I have only come up to the diagnosis and fitting & “test driving” of my RGP’s and have still to start on the amazing journey after this.

Maybe even this is “rare” again, but my life has actually been turned upside down in a positive way, despite of KC. Maybe that finally knowing what it was after all those months and knowing it was “manageable” made the difference?

I initially didn’t think I could ever live my life or work again the way I had before and  the initial return to work was very stressful for sure, and my overall journey since returning to work 6 months ago has been very emotional with a lot of ups and downs.

However, pretty early on I decided I wasn’t going to let KC limit my life, we all know it does of course, but I decided if there was something I couldn’t do, I would find a way around it, and if that didn’t work, then try again at a later stage. And yes, it has been a tough journey at times, and I end up discovering things ‘I Can’ or ‘Can’t do’ on a daily basis, and in a way a lot of things become like a “first time ” thing again.

I still walk into things and wake up the next morning thinking “where did that bruise come from?”, I sometimes need to rely on friends to help with things like reading of a menu or holding my elbow when negotiating some stairs, but it is not going to stop me from living my life to the full and In fact I think that by adapting that attitude early on, I now suddenly find myself, in Kuala Lumpur, Malaysia, instead of our company’s office in the East Midlands, working away and making my life with Keratoconus  work for me.

Try this one for size; I’ve tackled the “Batu Caves” there, 272 concrete steps up and 272 concrete steps down! You all know what a challenge stairs can be for us… so imagine how euphoric I was, only to be brought down to earth hours later when a colleague had to help me with 3 steps out of restaurant, as I literally could not see where they started or ended!

So, yeah, it’s been a been a journey, a scary one at times, but for now it looks like that with all its limiting abilities, Keratoconus has enriched my life as well, if that makes any sense at all? This isn’t to say of course that I might still come across that one hurdle that might  bring me down a little, but for now, it’s on the up… and I want to keep it there!

Marco Bos

Twitter: @KiltedDutchman


and blogspot: Icanseeclearlynow , a late 30’s Dutchy, Stumbling through life, sometimes quite literally



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