How do you explain it to people?

[ishkane]

How do you describe dry eyes to people? Do you call it dry eyes? I've found that as soon as I tell people I have dry eyes, they seem to think it's nothing, and tell me to use drops (gee, really? i hadn't though of it!). Even doctors and specialists seem to think dry eyes is just no big deal - "manage your symptoms," "use drops" is what they tell me.

So I;m wondering, do you describe your symptoms/condition in a particular way so people know exactly how you're suffering?

[irish eyes]

Ishkane

People think Dry Eye is nothing because the description itself is so innocuous. I rarely broach the subject because it only elicits the usual comments and `advice' from armchair experts. I've had this condition for a long time and even now, people ask me if I've seen a doctor about it or thought about using drops. One colleague was surprised that I bothered the doctor with it.......because she has dry eyes and she doesn't find it a problem. (Her own diagnosis of course).

The battle I had with our HR department bordered on the farcical when I asked for a bigger computer screen. I've developed a certain `vocabulary' when talking about my symptoms but it really baffled them - apparently they had never come across someone `like me' before and they needed medical & legal advice before they made a purchase! (Social model of disability? They had never heard of it! )

Doctors are a different matter; they usually make one feel that your case isn't that bad compared to another patient they are treating - and we should count our blessings etc.

[Súil Eile]

I usually throw in phrases like meibomian glands, lipid layer, tear film stability, punctal plugs, etc to confuse and distract. If that doesn't work I start explaining corneal erosions, and people generally stop asking

I avoid the term 'dry eyes' as much as possible, because there has been a vast increase in people diagnosed with mild dry eye (as a result of lasik, computer use etc) who notice no symptoms whatsoever, and so dry eye syndrome has become a misnomer and seriously undersells the severity of the condition and how it can affect our lives.

Irish, I can't believe you went through that hassle just to get a computer screen

[magoo]

I say something like this: "I have a very complicated condition of the inner lid and eye surface. I'm being treated by a specialist" The last part helps ward off the amateur 'helpful' suggestions that are soooo aggravating.

[NeedMyEyes]

Yeah, that's exactly what I say :

"Serrious debilitating Posterior Blepharitis that makes my work extremely difficult..."

"Meibomian Gland Dysfunction"

Thankfully I haven't any corneal issues yet, but occassionally I say things like:

"My optometrist is worried about corneal damage..."

"I want to keep my corneas and if this keeps up I won't have them anymore"

Anyway, I work in front of computers (several at once) for around 12 hours / day, so the symptoms bother me WAAAYYY more than they would if I had some other line of work. So, "dry eye" just isn't going to explain all my doctor visits, work breaks for warm compresses, etc. etc.

[ishkane]

Doctors are a different matter; they usually make one feel that your case isn't that bad compared to another patient they are treating - and we should count our blessings etc.

Having never suffered from a serious medical problem before, I am baffled and so angered my the response from doctors. My family doctor seems to think it's all in my head. The ophthalmologist who I saw on Monday told me it's not that bad/he's seen worse. When I told him how much this is ruining my life, he threw up his hands and accused me of wanting a quick fix.

I just don't get it - many many people suffer from dry eyes (this forum is a perfect example of it), so why aren't more doctors educated about this disorder?

[Súil Eile]

I say something like this: "I have a very complicated condition of the inner lid and eye surface. I'm being treated by a specialist" The last part helps ward off the amateur 'helpful' suggestions that are soooo aggravating.

Oooooohhh....this really gets on my nerves!!!! People suggesting using drops as if I'm too much of an imbecile to have ever thought of that by myself! It really gets me going. If I'm complaining about it, and it's affecting me badly, of course I'm trying to do something about it! But hey, some people are just born with a degree in opthamology it would seem. Lucky them

Anyway, I work in front of computers (several at once) for around 12 hours / day, so the symptoms bother me WAAAYYY more than they would if I had some other line of work.

Doctor Eyes, do you use a filter screen/ anti-glare screen at all? I know they can be expensive (particularly for multiple screens) but you'd be amazed at the difference they can make. I couldn't use a computer without one.

[Rebecca Petris]

Having never suffered from a serious medical problem before, I am baffled and so angered my the response from doctors.

Your feelings about this are perfectly natural...

I'm going to paste in here a comment I received from an optometrist after I wrote about dry eye and depression, again, in a newsletter recently (my emphasis):

Your Eye Say! column this time really hit home. I have the opportunity to provide care for many dry eye patients, OSD patients, KCS patients and ocular radiation burn patients. I never cease to be amazed by many of my professional colleagues that can't seem to accept sign/symptom mismatch so pervasive in OSD. I hope your article will help other ECPs to recognize this as they hear it more often and from other reputable sources. Further, we cannot underestimate the psychological influence of a chronic disease occurring in the most innervated part of the body. Its effects can be devastating.

It seems reasonable for us to assume that doctors in general - and certainly EYE doctors - are aware that the cornea IS the most innervated tissue of the body - and that, since this is the case, it is to be expected that minor disturbances to it can be exceedingly painful. But, the fact remains that most really don't get this. Education about this is a very slow process. It's one of the reasons I always urge EVERYONE to complete OSDI before EVERY doctor appointment and hand it to the doctor. It's far from perfect but it's at least a way to put our pain into (medically validated) numbers and by waving this flag under our doctors' noses frequently enough, they should start to become more conversant with the concept.

[poppy]

When I told him how much this is ruining my life, he threw up his hands and accused me of wanting a quick fix.

An eye doc told me the same thing, very rudely.

My opinion is that it is the DOCTORS that want the quick fix and they are far more guilty than us. If they can't fix something with a pill or surgery, they can't be bothered.

Just like a starving person would happily eat a slice of dry stale bread, I would be grateful to simply have the chance to try something that had some possiblity of helping me in a small way.

When you've had something for years it is very insulting for a doc to suggest that you are expecting a quick fix.

[poppy]

How do you describe dry eyes to people? Do you call it dry eyes?

I have never used the word dry eye to anyone (besides family). I have used terms like "inflammatory eye issue" and I have told them things like "I have a corneal ulcer" or just "I have a chronic problem with my eyes". I have been able to get my workplace to remove lighting around my workstation without having to use the term "dry eye". And even when people comment on "what happened to your eyes (why are they so red)" or "why are you wearing sunglasses inside" I never tell them dry eye.

I think rather than dry eye, perhaps "ocular surface disease" would be a better term.

[littlemermaid]

I say: chronic eye inflammation, no tear film, corneal damage, eye surface is maintained by drops, worse in dry atmosphere like air conditioning. Wrap around sunglasses suggests a possible disability discrimination issue. We usually get a sharp intake of breath, and a 'what do you need?'

[y-gwair]

I've stopped referring to this as dry eye, I think it's profoundly misleading, even for health professionals who should know better. I think chronic eye inflammation is a much more accurate description, followed up with a more graphic description of the state of the cornea. 'Dry eye' suggests that it's something that can be easily sorted out with a few drops when we all know it's far more complicated and difficult to treat.

[poppy]

I've stopped referring to this as dry eye, I think it's profoundly misleading, even for health professionals who should know better.

Yeah I think lumping ordinary everyday dry eye in with what most of us suffer from is like putting "dry skin" in the same category as some potentially very uncomfortable skin conditions.

I certainly have dry skin, but it's not a big deal, I have to moisturise each day or I'm quite uncomfortable - but I'm never in pain. And I don't have to constantly moisturise my body throughout the day!

[Rowanberry]

I read a book by a doctor who had asthma. He said that most people do not like to visit the doctor and will put up with things far beyond the point they should seek help. Inevitably, doctors do not see people like that often, but rather the minority who exaggerate their symptoms and ill health are over represented. This gives them a skewed outlook.

I've found that you get a better response if you give concrete examples. For instance, my mother's asthma was taken much more seriously when she told her doctor exactly how many steps she could take in what time instead of just saying it was really bad.

When I first had so much bother with my eyes being dry, I found that people would say they had that too. Even sites like sjorgens ones would mention it casually. I began to wonder if I was just being a big baby when I found this site and read about recurrent corneal erosions. At last a description of what was actually happening to me.

I am not sure my GP gets it, he has dry eye himself so he is sympathetic - he told a student that it does not sound bad but it is wicked - but he does not get RCEs and wonders why I get through so much drops.

R

[Jade]

Irish Eyes,
My corneal specialist told me the same thing (as your doctor) almost every time I saw him that he sees patients so much worse off than me. It's so frustrating. I even told him not to tell me that again and he still did. I have recurrnt erosions on my rt eye rk scars and he's given up and says they'll never go away, so now I'm pursuing different contact lenses with an optometrist to try to hang onto hope that someday my eye will heal. It's tough forge ahead looking for a cure when my doctor has given up and discourages me if I go see him. He doesn't feel the pain. I have no choice to look for a cure.