Explaining Dry Eye to people

[Dunnie]

I am new to Dry Eye Zone, pardon me if this question has been discussed already.

The people who are close to me don't seem to understand what this is. How could you if you've never experienced it? The name "dry eye syndrome" doesn't explain a lot either, because everyone has had at least mildly dry eyes at some point in their lives. To me, the name "dry eye syndrome" is like using the phrase "difference of opinion" to describe a knife fight. It doesn't sound like anything that would be a big deal or burdensome. I think the name is misleading.

There are people who I keep in touch with, but on a less regular basis, like old friends I might owe a call to or vice versa, whom I am loath to explain this to eventually. I think if I didn't have dry eye syndrome, I would have thought "so what" if someone told me they had dry eyes. I would have acted sympathetic, but inside I'd be thinking "what's the big deal, your eyes are dry?" It aggravates me because it is not easy to explain to people.

Also, there is someone particularly close to me who was diagnosed with "dry eye syndrome" a while back. This person even takes Restasis. But when I describe my symptoms, she has no understanding of these things. Basically, she must have an extremely mild form of dry eyes. This aggravates me for two reasons:

1) This person with "extremely mild dry eye" is harder to talk to than people whose eyes are 100% fine. The extremely mild dry eye person will often give me advice, whereas other people I know has been like "wow, that sucks man" (which is basically the only support I really need, just acknowledgment that my eyes hurt). The extremely mild dry eye person doesn't really know what I'm going through, but will answer me as if she does. I like it better when talking to people who make no pretense about knowing what dry eyes are like.

2) It makes me loath to explain my condition to other people, for fear that they may already know another person with "extremely mild dry eye", and think I am exaggerating my symptoms, or being a baby.

The second issue concerns me the most. How do you convey to someone the reality of this, when it has such an innocent-sounding name?

[Guest]

I know what you mean... I find that people who know me well are more likely to understand that MY dry eyes are disabling, rather than the kind of dry eyes that most of the population experiences from time to time ( ie. just a minor nuisance)

If I need to make someone new understand the disabling effects of my dry eyes, I'll mention that I wear goggles almost 24/7... ( although I'll just be gritting my teeth and using drops when I go back to work in Jan... goggles won't fly in my job...), I don't read for pleasure (I listen to audiobooks instead), I don't watch TV (instead, I only listen to it, glancing at the screen only when absolutely necessary), the breeze created from walking around is very uncomfortable and sometimes painful etc I find that if I take the time to really explain the specific ways this condition affects day-to-day living, people can imagine it a bit better.

However, no matter how I explain it, there will always be people who will think I'm just a complainer, exagerating, or that it's all in my head... so... I generally don't bother to explain my situation unless I absolutely HAVE to...

There are many times when I skip social outings because my eyes are bugging me too much... if it's a good friend of mine, I'll tell them the true reason why I'm skipping out... if it's someone I don't know as well, I'll just give some other excuse that they'll be able to relate to...

[irish eyes]

Hi Dunnie

Starting with your 2nd question - the one that concerns you the most - I don't even bother trying to explain this to people unless they really have to know. I don't see sufferers of other conditions feel pressure to explain their health problems with every minutiae of detail - nor should they have to.

I agree, the term Dry Eye sounds pretty innocuous. Try using the Latin translation Keratoconjunctivitis sicca and it might do the trick. As SAAG has stated, Dry Eye affects a lot of people but they might experience it as a minor nuisance. I've suffered with this for a depressingly long time and now I'm quite hardened to people's attitudes - sad but true. Where possible, I avoid people or situations that could be stressful. I might resort to excuses rather than reasons simply because I want to avoid hassle.

You will see that forum members all experience pain differently; it is a complex subjective phenomenon that can impact negatively on quality of life, incurring a huge cost - vulnerability, loss of economic resources, impaired social activity levels, depressed mood, isolation etc. It can demand constant scrutiny and attention, even when we are asleep.

It's very difficult to put one's own pain `under a microscope' for others to appreciate and understand. We all respond to it differently - a measure of what used to be called `character' was demonstrated by confronting a physical difficulty or being able to endure pain.

Returning to your friend who has Dry Eye; I can understand why you assumed there would be a better understanding but studies show that empathy `online' can be far more effective than conventional face to face. This link goes beyond what you need but it's interesting nevertheless. And you are not on your own!!

http://www.ifsm.umbc.edu/~preece/Pap..._Katz&RR02.pdf

[sanna]

irish eyes,

That is the word i will use Keratoconjunctivitis sicca. Great idè !

Dunnie,

You can always let this person know about this website and she can see that there are people with bad dry eyes and mild drye eys and so on...
She probably dosn´t know a lot about this and she could end up a lot worse with more problems one day.

[odydnas]

Hi Dunnie, I can definitely relate to what you're saying...no one really understands or even trys to understand. They think I'm exaggerating, making a big deal over nothing, or faking it. I really do regret ever telling people (save for a couple) that I have "dry eyes".

One time, I tried telling someone I had horrible "keratoconjunctivitis sicca" which is why I quit working. That completely backfired on me, because that person immediately whipped out her iPhone, looked up the term, and said "What a long serious name for something so stupid and silly"

I no longer try to convey to anyone the reality of the situation, or that I might even have neuropathic pain, because I know that chances are, people won't care, and some are downright mean. I no longer see a point in it. If people ask about my eyes, I simply say "It's very painful, and I'm still trying to get my symptoms under control" and then I change the subject.

I don't think that in terms of "illnesses" that dry eye is hte only misunderstand disease. Its usually difficult to get much empathy for those suffering from chronic invisible diseases like most mental illnesses, autoimmune diseases, Lyme disease, etc. I think the only time most people get muster up some empathy would be things like life-threatening illnesses such as cancer or heart attacks, injuries (because people can SEE that something is wrong), and the common cold/flu (because every has had first hand experience with that). I don't know if this ordeal has caused me to lower my expectations of people or what (but then again I use to be annoyingly idealistic), but I've come to realize that it takes a very special person to be able to show empathy and support for something they haven't experienced themselves. So if you are lucky enough to have anyone like that in your life, by all means, cherish and cultivate that relationship If not, well we have a whole community of wonderful supportive people right here, all of whom I am very thankful for!

[Lucy]

I didn't read through the posts above, but I have a suggestion that is sometimes useful. Tell the other person it's like holding a hot hairblower on your eyes constantly. That is the only thing I think will give them an idea.

Otherwise, it's a waste of time trying to get them to understand. Try to describe Sjogrens Syndrome to someone.

Lucy

[irish eyes]

Hi Lucy

I do so agree with you about the hairdryer.

But why stop there? How about offering to take the other person on an experiential learning journey? Devise a simple but humane demonstration so the other person might develop an even better understanding of how it feels -if the description is insufficient. I don't suppose many would take up the challenge.



Before my Dry Eye really `kicked in', I regularly suffered with acute bouts of uveitis (iritis) and I'm lucky to have kept the sight in my right eye. One well meaning idiot advised me that I should tell the hospital to remove the eye and then I wouldn't get the condition in it any more. What a brilliant idea.

[irish eyes]

One time, I tried telling someone I had horrible "keratoconjunctivitis sicca" which is why I quit working. That completely backfired on me, because that person immediately whipped out her iPhone, looked up the term, and said "What a long serious name for something so stupid and silly"

A long serious name for something so stupid and silly? Hmm - you can tell she's a latin scholar - but where would she be if someone took away her iphone?

I don't enter into any new discourse about my eyes these days - unless it's really necessary. By now, I'm reasonably adept at knowing why people might want to know what is wrong, so I have a few answers in readiness.

If I suspect that the question is merely out of curiosity (or mischief), then I simply reply that as it's so complex, I doubt that they would understand. If you do it sweetly, then they can't argue.

And they may not even recognise that you're patronising them.

[lizibet]

I do so agree it is so hard to try and explain our condition. I don't even try now, even my sister to whom I am very close, doesn't understand, so what chance for other people. The only friend who comes close to relating to me suffers from tinnitus, another very misunderstood condition, but she at least 'gets' it.

I have to say if it wasn't for this site and being able to read about other peoples experiences .................. well I don't like to even go there. It is such a comfort knowing I am not alone and when I am in a panic mode I read and re-read posts and it calms me down and makes me much more positive again.

lizibet

[cristiandryeyes]

No matter how you describe it, nobody is gonna get a close idea, not even remotely of what DE is, and most important what is like to deal with it every single day. It's frustrating. If I were you, I wouldn't waste my time.

[Michael2]

I usually just skip the name 'dry eye' and tell people I have corneal neuralgia, or that my eyes feel like they have glass in them 24/7. that usually makes people feel a bit more sympathetic

when i think back to my worst days, I cant even believe I made it through them. I think you need to have the condition to get it

[Jade]

Feeling like there's glass in the eyes is a good description. I tell people it feels like my eyes are being cut with a knife and I have acid in my eyes. But at this point I only talk to a few people about it. It is frustrating that people brush it off like it's nothing.

[Guest]

I've also had some success with explaining it like this in the past:

Hold your eyes open (don't blink) until they start to burn... keep holding them open even longer until it REALLY burns... THAT'S how my eyes feel all day and blinking doesn't alleviate for me like it will for you.

(Fortunately, my eyes don't feel like that 24/7 like they used to... thank goodness!)

But like I said, I normally try to avoid having to explain all this to people... it's just too hard for most people to relate to...

[Rebecca Petris]

Here's what I tell people:

Severe dry eye is like holding your eyes open and aiming a hairdryer at them.

Usually they wince and shudder and then I know they got it.

It may be somewhat exaggerated, but hey, it works.

I don't have to deal with this in the same way that most of you do since I work from home, and I very rarely volunteer information about my eyes without being asked. However by virtue of my occupation the subject does seem to come up pretty often in casual conversation.

Edit: OOPS, Lucy beat me to it. Next time I'll read the thread before replying.

[irish eyes]

Feeling like there's glass in the eyes is a good description. I tell people it feels like my eyes are being cut with a knife and I have acid in my eyes. But at this point I only talk to a few people about it. It is frustrating that people brush it off like it's nothing.

That is my experience too - but add in some salt, vinegar and lemon, pull the lids closed with needle and thread or possibly a stapler and then we're getting near to it! This is the nature of the vocabulary I use with doctors because a lot of them don't really `get it' either.