Explaining Dry Eye to people

[msienkiewicz]

Irish eyes,

You are soooooooo right! You all are. When I was at my worst, I was having my friends look in my eye constantly to see if the scar was any smaller. I overheard one gal say, "She's gone crazy"! I had never experienced pain like this before, and there was no relief. I would even feel the burning through the night.

Thank God, things are much more tolerable now. Not perfect, but much better. I feel for those of you who have not yet found relief. My prayers go out to you. There truly is nothing worse.

Melissa

[magoo]

My doctor explained to me that my problem stems from the tears being made into a substance similar to soap. Won't go into the complicated explanation here but that is what I tell people - that my eyes feel as though soap had been squirted into them, over and over and over.

The few people if have told this to seem to get a better idea of how it feels

[liz56]

My eyes started to water, just reading everyone's posts, describing the pain. Thanks, guys-- any naturally-produced moisture in my eyes is rare and welcomed. I'll have to bookmark this to re-read as part of my therapy.

I tell people that it is like like having a brush burn on your skin but only on your eyes, and it never heals up.

When I was having REC's (recurrent corneal erosions), I was very lucky that one of the administrators understood. Unfortunately, she only understood, because she had them, due to a traumatic injury she sustained when her son poked her in the eye when he was an infant, and his nail took a deep section of her cornea. She also knew that for people like me ("without the enzyme," as she put it, being a chemist), the healing was really slow going and could go on for years. It was such a fluke that someone understood, but I am grateful for it.

--Liz

[Michael2]

i explain it like the feeling you get after falling asleep in your contact lenses, but you cant take them out ever.

i'm getting over a cold and it's amazing how much more concern i get for that then my dry eye problem. invisible diseases suck

[Dunnie]

Thanks for all the replies. Somehow, I didn't get the thread reply notifications in my inbox.

If people here, some who have had it for years, haven't been able to put together the magic words yet, then its fruitless to try explaining it unless needed.

That said, I've been thinking of how I might explain this to select people.... It would seem that "Eye disease" and "susceptibility to infection" might register more with people than explaining discomfort. I think talking about damage to your cornea, etc, would gross most people out enough to bypass their "so what" reaction. Something like "since I have no tears, I have no protection for my eyes, and thus have greater susceptibility to eye infection and damage to my cornea". Then you are not asking them to understand how you feel, but rather to understand what makes DES such a big deal.

The hair dryer one is right on... it actually reminded me its time for eye drops.

[irish eyes]

Although some comments are well intentioned, I can find myself `bristling' when people tell me to "be positive".

There is a big difference between being positive and being realistic. This is particularly relevant when I ever allude to the limitations imposed by the constant pain & discomfort.

When I'm being realistic, people have accused me of being negative - but it's not that. It's about my limitations and surely I'm the best judge of that.

[Guest]

Well said, Irish Eyes!