reasons why dry eye isn't taking seriously?

[Michael2]

so everyday i'm still in awe that something like this is not taken that seriously in the medical world. it's one thing for a condition to be chronic, and another thing for there to be so few success stories of people with severe cases managing to get back to baseline. i've come up with a few reasons and maybe this would be a good way to address the issue:

- chronic conditions do not make sense to a non-chronic sufferer. at some point people (and I usually mean doctors) expect the chronic sufferer to accept the condition because it feels like it's okay for that person to continue suffering since they've been suffering for so long. of course, for most chronic conditions people can probably remember the exact day or week it started. i can remember the moment. most people can't relate. and it doesn't make it okay to continually suffer.

-dry eyes sounds innocuous. i think it's incredibly important to change the name of the disease to something else, maybe tear dysfunction syndrome. in fact, I would even suggest more people call it that. no one calls asthma 'tired lungs.' until that is done no one will take it seriously at all. i've suffered for a while and even i can't take the name seriously

-it is a condition most experienced by the elderly or women. people don't take elderly concerns seriously

-99% of the cases aren't severe. dry eyes exist, for example my aunt or grandparents tells me how much they hate it...but when I tell them what I was like at my worst, it's not even in the same realm. it's definitely not a coincidence that no one in most communities has heard of it. if you're one of the unlucky ones well then it just sucks to be you. i saw an old man wear panoptx glasses yesterday, and that is the first person I've seen wearing those in a year. and I live in a big city and look for people blinking excessively or wearing those glasses. i also had a discussion about this whole saga with the chief of staff of a major chain of hospitals here. he has never heard of it, ever. in order to get to this website you probably have to be a severe case, and by that time you're in a small community all struggling with the same issue so I think maybe we take it out of context about the number of people that suffer

-signs do not match the symptoms

-and finally, it's not a disease that really makes sense. the idea of being in chronic eye pain is not conceptually sound. it's just pain yah there must be something you can do about it right? i can imagine getting in a car accident but imagining getting severe dry eye overnight...no way

that being said, i think it's absolutely absurd there's not much out there in terms of treatment that brings people long lasting relief. i can even understand conditions like tinnitus being difficult to treat, where it might be hard to look at microscopic eardrum hairs on the inside of the body. or to look at the nerves inside the ear. that makes sense why it's hard to treat. but dry eyes?? especially MGD...I can feel exactly what's wrong for me, why is chronic inflammation so hard to treat?? to me it's honestly a lack of effort from the entire ophthalmological community and the inability to look 'out of the box.' the idea that someone could fall into pain one day from the backing up of meibum and so severely struggle to get better is crazy and not okay. obviously i'm preaching to the choir.

[irish eyes]

Michael

I so agree with everything you say.

A change in attitude is an important driver; even my consultant admitted that this condtion was not really taken seriously in the majority of cases.

And as you say - it's assumed that if you have had it for a long time, then you might as well get used to it.

I wonder sometimes if it's a cultural thing but this is the 21st century!!

[regina]

Can I hear an AAAAAMMMMEEEEN

Nice post! It is frustrating to say the least. I also remember the day....first day of work in a newly constructed building with air so dry you can shock yourself on the furniture. The humidity hovers around 36...YUK

[Gretchen]

Michael -

I agree. However, to say that we are a subset or minority is not accurate. By some estimates, 40% of eye doctor visits are for dry eye. The issue is that we are currently not treatable. And Dr's do not like that. As someone correctly pointed out, we take up a lot of chair time and we rarely respond to treatment. Eye doctors really like to "fix" people. They like to remove cataracts, perform lasik, very clear cut before and after scenarios. They are not used to chronic issues and don't like it.

I think that part of the issue is $$, but really I don't think that that is the complete picture. Doctors can be greedy but they are also very motivated by patient outcomes. And ours are bad. Almost always bad. If you talk to an honest and open eye doctor (preferably one who has had a cocktail or two), they will all tell you that this is the reason why eye doctors do not like dry eye patients. We do not allow them to feel like heroes at the end. We just keep coming back saying <insert lame drop here> didn't work.

Regards,
Gretchen

[Jade]

It is amazing that we can't get proper treatment or even acknowlegement of this devastating condition. Ophthalmology ignores us and doesn't study the condition properly. LASIK has corrupted ophthalmology even further by making profit more important than healing. The people we're looking to for healing are the people who are causing a lot of the devastation.

[wetEyes]

Three more reasons:

(1) Keratoconjunctivitis Sicca doesn't cause blindness in the vast majority of cases. And opthalmologists are used to see visual acuity as the primary indicator of eye health and disease. They are not used to recognise patient comfort like orthopedist specialists do.

(2) People think "if someting is dry, just make it wet by adding moisture" - like using a lip balm or skin lotion. My relatives were surprised to hear that artificial tears provided relief for only a couple of minutes. They thought they would help for several hours.

(3) Most people - including opthalmologists - can't relate to the physical pain a compromised tear film can induce.

[sazy123]

Michael -

I agree. However, to say that we are a subset or minority is not accurate. By some estimates, 40% of eye doctor visits are for dry eye. The issue is that we are currently not treatable. And Dr's do not like that. As someone correctly pointed out, we take up a lot of chair time and we rarely respond to treatment. Eye doctors really like to "fix" people. They like to remove cataracts, perform lasik, very clear cut before and after scenarios. They are not used to chronic issues and don't like it.

I think that part of the issue is $$, but really I don't think that that is the complete picture. Doctors can be greedy but they are also very motivated by patient outcomes. And ours are bad. Almost always bad. If you talk to an honest and open eye doctor (preferably one who has had a cocktail or two), they will all tell you that this is the reason why eye doctors do not like dry eye patients. We do not allow them to feel like heroes at the end. We just keep coming back saying <insert lame drop here> didn't work.

Regards,
Gretchen

Completely agree, If treatment came on the market which actualy helped a large percentage of patients, i think doctors would make more effort to help because they have more HOPE that what they are doing is going to help, unfortunately there isnt much they can do.. so they get very frustrated, and they dont want to spend the time looking into currently available options which may help patients (its better than nothing)- or may give ''some'' minor improvements but take up alot of chair time- or doesnt help at all. If your lucky and one of the few that responds to restasis- doctors will be happy to have you in their chair.

With things like IPL which is seeing results.. docs may have more interest in taking up this method.. and theres money in it.

[calcan]

Michael -

I agree. However, to say that we are a subset or minority is not accurate. By some estimates, 40% of eye doctor visits are for dry eye. The issue is that we are currently not treatable. And Dr's do not like that. As someone correctly pointed out, we take up a lot of chair time and we rarely respond to treatment. Eye doctors really like to "fix" people. They like to remove cataracts, perform lasik, very clear cut before and after scenarios. They are not used to chronic issues and don't like it.

I think that part of the issue is $$, but really I don't think that that is the complete picture. Doctors can be greedy but they are also very motivated by patient outcomes. And ours are bad. Almost always bad. If you talk to an honest and open eye doctor (preferably one who has had a cocktail or two), they will all tell you that this is the reason why eye doctors do not like dry eye patients. We do not allow them to feel like heroes at the end. We just keep coming back saying <insert lame drop here> didn't work.

Regards,
Gretchen

Truer words were never spoken. I have personally experienced doctors who discouraged me to return to their offices because my condition wasn't really improving. This was over 20 years ago when I first went for help. It has discouraged me from getting help today. I'm reluctant to go to an opthamologist now because I figure he/she will put me on restatsis, and knowing me, that will just irritate my eyes further. I'm between a rock and a hard place.

[cristiandryeyes]

What goes against nature is to suffer chronic eye pain. I have suffered from dry eye for almost 2 years. I would lie if I said I have suffered from eye pain during all this time.

Dry eye is very uncomfortable, eyes feel so tired and wind is really annoying BUT this is different from suffering constant PAIN.

I know each DE is different but I refuse to think all of you have to deal with 24/7 eye pain. It did hurt for me when I had corneal erosions, but it lasted for 1 month, maybe 2 months then pain vanished.

What I'm pointing out here is the difference between dry eyes and having constant pain. DE doesn't translate directly into pain. I had severe dry eyes exactly one year ago (Schirmer I/II/PA 0-0) and did not suffer from eye pain. I mean I could feel my eyes tired but they didn't hurt.

If your eyes hurt maybe something wrong is going on. Eyes aren't supposed to hurt, I have never heard of anyone saying 'oh my eyes hurt'.

After all this time, this kind of debates is senseless. Why are you discussing this? Even you Michael2 have seen remarkable progress in your condition why not think you can be almost cured or cured one day? If I were I would encourage people to get the proper dry eye expert, because that's what you've learned from your own experience, right?

[Guest]

Dry eye is very uncomfortable, eyes feel so tired and wind is really annoying BUT this is different from suffering constant PAIN.

I know each DE is different but I refuse to think all of you have to deal with 24/7 eye pain. It did hurt for me when I had corneal erosions, but it lasted for 1 month, maybe 2 months then pain vanished.

Just how "uncomfortable" does one have to be to qualify as being in PAIN?

If you get sharp stabs every time you blink, I suppose that counts as pain... but what about when it merely feels like your lids are scraping across your eyeballs with every blink... is that merely uncomfortable and therefore something that we should just suck up and ignore?

What if one's eyes are so "uncomfortable" that one cannot even keep them open for several hours each day?

What if one cannot read their toddler a short book, use the computer, cook, or do anything that they might really "get into," and therefore concentrate on, and therefore blink a bit less, because to allow that to happen would cause their eyes to start giving off those uncomfortable stabs of pain with each blink?

If one can avoid experiencing 24/7 pain merely by cutting out many or most of the daily activities/hobbies that used to give one pleasure, working less productively at one's job, or not working at all, then I suppose that is not deserving of any sympathy because hey, at least you're not in 24/7 pain.

So yeah... I suppose it's no wonder the docs don't take us seriously... hell, even people who HAVE dry eye can't relate to what many of us go through. Severe dry eye just isn't that bad... it's no big deal... life goes on, right?

DE doesn't translate directly into pain.

I beg to differ... it often DOES translate directly into pain.

I had severe dry eyes exactly one year ago (Schirmer I/II/PA 0-0) and did not suffer from eye pain. I mean I could feel my eyes tired but they didn't hurt.

I'm glad you were fortunate enough to not suffer almost constant, long-lasting pain, as so many of us have.

It is well known and accepted that Schirmer scores do not always correlate well with a patient's level of discomfort.

After all this time, this kind of debates is senseless. Why are you discussing this?

Why? Because sometimes it's a comfort to discuss things like this that cross our minds from time to time with people who know exactly what we're going through...

Even you Michael2 have seen remarkable progress in your condition why not think you can be almost cured or cured one day? If I were I would encourage people to get the proper dry eye expert, because that's what you've learned from your own experience, right?

While many of us will find our "cure", there are also many of us who will not... there simply is not a cure out there for all of us. Maybe there will be someday, but if that cure is, say, 20 years away, many of us will be waiting a loooooong time for it.

Sorry, but I felt like your post trivialized what a lot of us have gone through in the past, and what many of us continue to go through now.

[magoo]

post removed by magoo

[FWM]

Chill out everyone.. i believe he didnt mean to hurt anyone..
we must first define pain.. my friend wikipedia says..

Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage

So pain is emotionally related, not just only physical pain..
If i can't see/sense others physical's pain, it does mean he is not in pain??.. if we think this way i think we have not learnt anything from our diseases, right?..
thus, people who have gained inner strenght or a positive outcome in their perceptions or treatments should not understimate others who havent achieved that level yet.

[cristiandryeyes]

@SAAG: don't get mad at me. We are on the same team. I'm not discussing if DE is a serious disease (i know it is)...what bothers me is that pessimistic attitude some of you have.

I don't like people limiting themselves,.. Who said to you DE is no recoverable? the same Dr. that screw up your eyes? Of course DE is recoverable, from what I understand the only think is not treatable is the ability to restore normal tear flow in elder people. That is what doctors call chronic dry eye.

Why such a young person like you would want to add more barriers and more barriers? hey, make it clear for me...you want to get over this right? well start by don't letting it possess your life.

Besides, it is no news that 90 % of doctors cannot treat this disease since they lack the proper knowledge. They work for the money, opthalmology is a vocation just for a few of them.

I mean I still feel sharp knives when I blink (more or less what you described) and if I can be this optimistic, why you act like this? .... that's why I say it looks like you love having dry eyes and complaining about everything, it's fine to express what you are going through but never say never. Never say there is no cure, there is no capable doctor, and DE is not curable, because that's BS.

Start being optimistic for once, you are going to help others, and yourself.

[magoo]

I think that the doctors feel dry eye is boring and doesn't pay well.

[Guest]

@SAAG: don't get mad at me. We are on the same team. I'm not discussing if DE is a serious disease (i know it is)...

Sorry if I jumped all over you... I apologize for getting angry.

I don't like people limiting themselves,.. Who said to you DE is no recoverable?

Despite the impression I've given you on my previous post, I'm not really pessimistic (at least I don't think so...)... I'd like to think I'm an optimistic realist.

Optimistic because I do still hold out some hope that I and others like me can be cured one day.... hopefully it won't take years... but you never know... If I didn't have a bit of optimism in me, I wouldn't be reading this site anymore hoping to find some clue that might help me... hoping to find a doctor that can help me... hoping to find ANYTHING that might help me...

Yet I think of myself as a realist because after seeing a small number of people here who have suffered for YEARS (in some cases decades), and have still not found a cure for their particular set of circumstances, I think it's realistic to assume that there will always be some who might be particularly unlucky and suffer with this for years as a medical mystery of sorts...

So, I like to hope for the best, but prepare for the worst just in case.

To me, preparing for the worst just means figuring out how to make my life easier with my eyes as they are right now.

As for happiness, 90 % of the time I'm very happy... 9% of the time I'm just average (neither happy nor sad), and the other 1% I succumb to being in "the depths of despair"... I know... totally melodramatic, but I really does sum up the way I get during those times...

if I can be this optimistic, why you act like this?

Everyone's brain is wired differently... maybe you feel better by simply insisting to yourself that FOR SURE you will be cured some day (and I hope you're right!)... but for me, allowing myself to feel that certain is just setting myself up for a huge emotional crash if it doesn't happen... And until you've been me, and experienced exactly what I went through, you can't be sure you wouldn't be the same way if you were me.