UK Keratoconus Self-Help and Support Association

Hello the everyone
As a newbie it is lovely to be able to speak to people who know what its like to live with KC.
As I've said previously I was diagnosed around 24 years ago and up until finding this fab site had never spoken to anyone else with KC.
I'd like to know has anyone else had to put up with hurtful comments from people who really dont know what they are talking about.
One of the main comments, if Im having a bad contact lens day is "why dont you stop being so vain and wear glasses". (If only I could I'd jump at the chance).
Just wondered if anyone else lets it get to them or have you learnt to rise above it.
Think the problem is that our eyes look so normal that people just do not understand how badly our vision is affected.
Sorry about moaning - just needed to get it off my chest]
Libby

Yes sadly most of us have been there, the glasses thing is the one we all seem to get which is based on vanity. Even with nurses at work i struggle sometimes to try to explain the condition.

Hopefully we can raise our image and make this condition more well known.

Keep being strong we will get noticed!!! Love ... Sweet X x X

Yep! Im sure many on here will and can relate to that!

The most obvious one is Why Dont You Wear Glasses.....in fact I think there was a thread not so long ago about all the comments users have come across....but cant for the lift of me find it right now

Yep, me too: but people only say that sort of thing to me once! I ask them if they would tell a polio victim to stop being vain, give up his caliper and take to a wheel chair, or a deaf person to stop being vain and give up his in-ear hearing aid and take up a hearing trumpet?

I once told somebody that if she was not so self absorbed it might occur to her that some people live with difficulties that she could not understand or imagine. She was giving a friend who was struggling on a bad eye day with her contact lenses a hard time.

I am sorry that you are having to endure the cruel barbs of the emotionally crippled, but help may be at hand as Lou gets together the badge. Then people, instead of making stupid comments about your lenses, will ask "Oh that's an interesting badge, what's it all about?"

Andrew

Yes I know exactly how you feel and yes perhaps the badge idea might help on the bad days as an extra aid.
I would give ANYTHING to wear glasses and reckon most of us here would too. We don't have a choice about lenses and people don't realise that without them we can be at the other end of the eye chart. I panic if I have to take it out whilst outside because I can't shop/navigate easily and feel vulnerable. Equally a bad lens day can be really painful when it's that really sharp pain, and it's worse when it's windy/dusty. Others have no idea how scary it can be to be in pain [and blinded by light] on a very busy high street.

The way I deal with the lens/vanity comments is to describe in detail with as much gore as possible about cornea transplants. I liken the trephine to a pastry cutter cutting out the diseased and donor corneas and talk about pressure testing, stitch removal, my first very massive hydrops, rejection, subconjunctival injections etc until they practically beg me to stop.
They never make that statement again after I've finished with them!

We have NO choice about any of this whereas those with bog standard short sight who opt for laser treatment because they are too vain to wear glasses DO have a choice.

Even sight impairment teams can be ignorant with comments such as "can't the lens be fitted better so it doesn't hurt?". That guy verbally lost his testicles...

Perhaps we need a thread on different things we can say to the standard stupid things we are used to hearing, would be useful to have a stock of responses!

All the time! I would love Glasses these days you can get really cool ones.Ignore them If they keep on ask thenm to check out your condition on the net.

Happy New year

I too have had these sorry sad remarks. I would dearly love to wear glasses (how simple it would be) Sadly for me lenses just did not work for me at all. I fumbled my way around for so long, and yes it is very frightening. Hopefully my recent graft will prove sucessfull

Diane

That is the hope we all share for you!

Andrew

Diane,
We have been living the same life my friend, I`m post graft too and am shuffling around waiting for descent vision.Heres to a Clear and focused 2007

Denner

Not had these commnets but that might be because when i went back to work after being diagnosed I pilferd loads of information from this site and prepared a presenation that outlined what KC was, the treatment and why I might have vision problems some days. This all got put into my collegues training records. This protects all of us with respect to the Disability Discrimination Act. Now we have the employers leaflet which I have a copy of at work and home. So rather than explain my self, I give a proffesionally set out document from the support group which is a registerd charity. You will be surprised at how peoples attitudes change as it is all too obveous they have caused offence due to their ignorance.

Keratoconus at Work