UK Keratoconus Self-Help and Support Association

when seeing someone, i completely freeze up when telling them I have KC in one eye... i am at loss on how to even begin
its becoming more and more frustrating...i have mild KC in one eye and none in the other c3r'd and stable for years..
but there is always potential for progression , but i really cant put my life on hold now can I ????

but as soon as I say KC , people Google it, read the about degenerating cornea,cornea transplants, intacs , etc etc and how c3r is experimental etc and run ..
no one wants to be around someone with a disease, and I feel like a nuisance trying to find my way out in dating world...
i am beginning to think I will never settle down and it saddens me that I can never have a normal life again...
someone please tell me a milder .. less traumatic way to break to the person you are seeing that you have a disease that may blind you.. but for now its under control???
right now I feel that its impossible .. really

sarkac

I guess you describe a series of dilemmas with which we all have to deal. There comes a point when people need to know; but how do we tell them?

Firstly, of course, "could make me go blind" is true but it describes only a very rare outcome: "is now under control, and if it progresses further are other things that can be done".

Why focus on the worst possible outcome when there are other, more likely and very much less frightening results. Also, why not trust people who need to know that they will understand and want to support you, rather than reject you and shun you as someone akin to a modern Leper?

So far as anyone knows, keratoconus is not caused by any infection or contagion. You pose no risk to the people around you.

Every good wish as you try to navigate the labyrinth of relationships. But also remember that there are thousands of us who have been where you are now, and the vast majority of us manage to live happy and productive lives, rich in relationships and supported by the people around us.

Andrew

I second that Andrew

Also there are many people a great deal worse of than us who enjoy full relationships

Regards

I assume you get by with soft contacts? If so just tell them you wear contacts?

I wear soft in one eye and soft/hard piggybacking in my other. I just say that to people. I don't mention about transplants and all that (it's be like saying you might die, because of cancer because you smoked for a bit).

Thanks..
I keep reading the replied every time I panic...
was quite helpful
regards
sarkac

Wow,

I've got to admit that my first thought is that you should find less cowardly people to date. As far as diseases go, KC is is fairly manageable. While I'm sure she occasionally worries about the long-term stability of my crosslinked KC, on a day to day basis I don't get the impression that my girlfriend thinks of herself as living with someone who has a disease.

Secondly, is it possible that you're making them worried? You say you freeze up, which probably makes it look more scary than it is. Also, how does it come up? Do you wait for it to naturally come up as part of discussion about your glasses, or do you make a point of telling them about three dates in/ Because, again, if you give them the impression that it's something you *have* to tell them, they're going to think it's a bigger deal.

Look, you have mild KC in one eye. Compared to most of us here, you're not too badly off. Don't make a big deal about it. If they ask why you wear glasses, just say you have an irregular astigmatism in one eye, and leave it at that. At least to start with.

For years I told people I had bad astigmatism.
They looked blank

I said picture your eye ball it is round like a football
Mine is more like a rugby ball - a bit oval in places

Everyone seemed happy enough and could cope with that explanation!
Ian

Since being diagnosed, I just tell people that I wear rigid contact lenses?

Outside of my family & close friends (and others who I NEEDED to inform), nobody even knows about it... and they never will unless I make a point of bringing it up.

Even when I do tell people, they are more intrigued than disgusted.
As it's not a well known condition/disease, people want to learn a bit more about how it was diagnosed & its effects.
I've never once encountered someone who ran for the hills because I mentioned I have relatively poor eyesight.

Maybe you are just "over thinking" it.

And if you do meet someone who is put off because you have a mild, manageable problem with your eyes - they're probably not worth your time anyway

Thanks that makes sense. I really need to not make a horror story about this.
Knowing the google trauma I went through when I was diagnosed , I can only imagine what he would go through when he googled for it, which is why i was so reluctant to mention "KC"
The problem is with the severity of the information out there,even though most of that does not apply to me.

I would really prefer to start off with astigmatism with hard lenses, and only when the condition progresses would I mention keratoconous, but I feel like a am being deceptive :S

We have been seeing eachother for a few months, and he asked me if I had any health issues, because he had supposedly gone through a "horror" incident , as he put it, with another lady , when she had suppressed the fact that she had glaucoma ,and was close to being blind in one eye, when they were about to get married. I could not help feeling sorry for the lady, even though I do not know her ..
I feel miserable at the world,I don't know who is more wrong here, him referring to glaucoma as a horror story for him , or me not wanting to reveal KC ... world works in a strange way

So after he said that to me I froze up , thinking there goes , I'm the next horror story for him , so I did not mention K yet , but I am planning to say something ..... wish I could dream this away ...

Is there a need to mention KC when dating people?

I used to wait until well in to a relationship and then only casualy if it came up in conversation like I was unable to make a date beacuse I had a hospital aoppintment or if I had to put some eye drops in.

If i did mention KC early on it was usualy after a really cheesy chat up line "Do you want to see my operation scar?" and if they said yes, I would say "Look deep in to my eyes!" at which point they were close enough to grab a cheeky kiss

When you get married it is for better for wrse, in sickness and in health. Anyone who doesn't want this responsibility, then you are better off without them.

Cheesy chat up line worked for me and been hapily married for over 17 years, with a 13 year old daughter.