UK Keratoconus Self-Help and Support Association

Hi all

How do people deal with the mental challenge of having KC? i seem to constantly think about it and barely a moment passes where its not on my mind.

I generally get on fine with contacts but its difficult to not think about it all the time

thanks

nope if honest I just go about my day, my lack of eyesight and visual disturbances are a small part of my day to day life.,

there is sight related counselling available for free via teh RNIB maybe give them a call on their helpline and ask to refer yourself? I had some sessions iwth them when my KC left me registered as legally blind / severely sight impaired over a decade ago and it was incredibly benefitical to me x

Hi Kieran, I struggle with it, with lenses, the prospect of graft failure, more surgery, I greatly fear being permanently SVI in both eyes on a permanent basis, I experience panic, anxiety, depression. I also find it difficult that we don't have official recognition of variable impairment ie without lenses, before/after surgery, it would help if services gave us a card, something. Only today Claire Sisko on the news as a registered blind person speaking about being called a faker because of makeup, using a phone, so what chance does variable impairment have, even less.

What I've found helpful is not deny how I feel - however we feel is justified - we're not obligated to be stoic, be positive. I feel forcing that makes me feel worse.
So I have bad times, but I've also learnt to shelve it as well, because I can't be immersed in it 24/7.