How do people close to you respond to your dry eye syndrome?

[No tears in ATL]

Family, for instance--are they sympathetic, or do they think you are overreacting? Do they comment on eye redness or say that they barely notice it, and that you look normal?

Friends...do they accommodate you and try not to schedule events in highly A/C'd environments, or does your pain go ignored?

Co-workers....same deal, are there funny stares or are folks understanding of your having to wear goofy looking moisture chambers from time to time?

My experience: Family understands the pain (now), but I do get concerned looks from them and every now and then a comment on the redness and how my eyes must hurt. Co-workers look at me a little funny and when I tell them what's going on there is the skeptical look of "she must be some kind of hypochondriac." Friends, well, I don't think they've caught on yet...may take more time and educating for them.

[lulu]

My husband....Fantastic, just could not be better.
My brother......Because I no longer follow the super strictest diet his "guru"nutrionalist put me on, he has no time for me and comes out with helpfull comments like "there is no helping some people" (despite me trying it for months)
My Stepdad....."some sort of allergy you have got" after nearly 10 years of this, even in the winter!
My Mum in Law.. "are you better yet" no I am not "oh"
My Mum......"pain, uh, tell me about it"
Neighbours......There she goes minus 1, middle of winter dull, with sunglasses on!
Friends....".Isnt there something they can do" or do you think this is "unresolved" past events in your life?" (I always love that one)
My Rheumatologist "just change your eyedrops"
And so on and on..........

[gormz]

I generally tend not to talk with people about it unless they have dry eyes themselves. I tend to feel that most people trivialize it and just think if you put some drops in it will be fine or that it will get better in a few weeks. I don't blame people for doing it because they just don't have a frame of reference for how difficult it can be.

That said i think my family has been the only very supportive people after ive had to deal with this for awhile. Autoimmune things run in my family so they tend to understand how a condition can be very debilitating.

[LaDiva]

"Have you tried eye drops?" Yes, all of them.
"Are you feeling better?" Yes, but not good.
"Can't they do anything?" No.

I think most people have no idea how the unrelenting nature of this disease wears you down. The hardest part is getting folks to understand that it isn't going away. I hope it will, but so far, it hasn't.

[Bill Sonoma County]

"Have you tried eye drops?" Yes, all of them.
"Are you feeling better?" Yes, but not good.
"Can't they do anything?" No.

I think most people have no idea how the unrelenting nature of this disease wears you down. The hardest part is getting folks to understand that it isn't going away. I hope it will, but so far, it hasn't.

Wow. Frame that one. Thanks LaDiva.

[robster]

I think the name of the condition "dry eye" sounds so innocuous that most people simply don't realise how painful dry eye can be. I had heard of dry eye before I had LASIK but like most people had no idea how debilitating the condition could be. I don't tend to talk much to family and friends about it simply because I don't think they have any real concept what it is like. Many people can't refer to eye pain like they could back pain or a headache.

[Guest]

Like Robster, I don't talk about my eyes much to anyone - usually I just keep on putting in drops, wearing my moisture chambers and get on with life, know what I mean? Sometimes people ask when I'm out socially, and if they do, I explain it a briefly and try to get back to the business of having fun asap My thoughts are that if people are out having a nice time, no sense putting a damper on things by discussing my eye issues more than necessary.

However, if there is a fan on or a breeze that I can't handle, I'll just put on my moisture chambers. Most people have no problem with turning off a fan for me either.

Family - They tend to ask me how my eyes are at every visit - I get the feeling they are asking because they are hoping I'll say I'm doing so much better... makes me feel bad to say things are the same... but what can you do...

Friends - if it's a bigger group of people, I wouldn't ask them to change their plans on account of me (if it turns out that what they are doing is not doable at all with my eyes, I'll just make an excuse to get out of going) - if it's a small bunch of close friends, then of course every individual gets more say in what we'll be doing, myself included - I don't try to avoid a/c environments for social occasions really (I just use drops as much as needed)

Co-workers - I've explained my issues - I turn off the fan as soon as I arrive at work because my custom moisture chambers don't block that breeze enough - if I were working with people that absolutely felt like they HAD to keep the fan on, I'd switch to my sunglasses Wiley X's - since I'd be wearing them for medical reasons, no-one would stop me (even though they look somewhat silly with our work attire haha) - with co-workers, I think it kind of helps that I order my eyedrops at work, so when a CASE of Bion Tears or Celluvisc arrives, plus my Salagen, Restasis and all my other stuff, and I pay the bill of over $900 for the lot of it, well, let's just say that is NOT a typical order and it makes it painfully obvious that I am not just a hypochondriac haha (and if I were, I guess I'd be a bit of an idiot to waste all that money to pretend to have a medical problem lol)

All that being said, most people cannot relate to how uncomfortable this condition can make a person... they can't relate to how painful one's eyes can be... most people see this as just an annoyance. Not they're fault - that's what I thought before LASIK too - the LASIK doc confirmed that a small annoyance is the worst dry-eye-induced LASIK can be, and we all know none of them have ever misled a patient, right?

Also, I'm long past the depressed phase of this - I'm usually pretty cheerful and matter-of-fact about all this, so maybe that helps people to not tire of my crazy dry-eye coping strategies? But then again, as if it should bother anyone to see someone putting in drops all the time, right? If anything, I find people to be a tad bit in awe (oh yes, AWE!) of my super-duper eye-drop aiming skills - not only do I almost never miss, but I'm rather speedy at it too! So nice to be able to provide fun, free, family-friendly entertainment to the masses! (err, maybe I ought to keep a donation jar handy to cover my eye drop entertainment expenses?)

[DCRdryeye]

WOW...I relate to everything that's been said here and have had just about every response too, we are all the same. Dry eye is very much trivialized. I don't get 'red' eyes unless I've worn my sclerals for too long, but the lack of redness and the fact my eyes look normal doesn't mean I'm not in a lot of pain. A 'Professor' of opthalmology I saw wrote on his notes that he didn't consider my eyes "looked" very bad at all, he didn't even do any tests on me. Others have tested me with a Schirmers of 1mm, and I cannot go longer than 20 minutes without my moisture chamber glasses.

I do get embarrased wearing the moisture chambers. I'll take them off when entering an establishment such as a shop, then put them back on once I can't cope with the pain anymore. I often travel on the train into the city (3 hours trip) and when I first meet and speak to the people seated next to me I take my moisture chambers off and have eye to eye contact. Then, within 30 minutes or so, I'll put them back on and often give a justification as to why I'm wearing them (yes, I shouldn't have too justify myself, but I feel comfortable they have a reason not to think I'm weird or a nerd). After the justification, "Can't you use eye drops or something like that?", my response, "Yes, but they don't work very well"....

[No tears in ATL]

Wow, interesting responses here. Maybe I'm weird, but if someone described any medical condition to me, I'd be pretty interested and try to understand as much as possible. I wouldn't look at them as a Debbie Downer type, necessarily, it would just be an opportunity for me to learn. Then again, I've always been that way. We're all human, none of us born perfect, and everyone longs to be understood. Although now it makes sense why old folks love to tell me about their knee surgeries and so forth.

[sunshinelover]

If only all people were like you! I am the same way myself , may be since Ihave a background in a medical profession . But unfortunately I have än learnt the hard way that getting a chronic desease with constant pain i s not something people can relate to...

[littlemermaid]

Apparently, and this is most of the medical profession, children don't get dry eyes or rare diseases much so there's no point making provision for them and someone else should be doing it.

Most robust and inspiring comments to a child so far, from elderly friends: 'you're very welcome to our club of the infirm, bits are falling off all over but we keep cheerful and have a laugh!' I just loved that and she felt right at home instantly and so it goes both ways. These are the people who ask the child direct how the eyes are and what the prognosis is currently. What a relief for her to get understanding.

Now I know more what to say to friends who have a diagnosis - ooo how interesting, who are you with, what are they doing, what's it like, what do you need, check for available aids/government help, check regularly how it's going, and take them out as suits the condition, and home again or sleep when they are suffering. Any more guidance on this?

[mgshutterbug]

Yes, I agree with DCR and others here. I don't talk about my DED (dry eye disease) when I meet new people, when I'm applying for jobs, to most people. If someone asks why I wear "those glasses" (wear Oasis with inserts - look huge on my face, but they're the best I've found yet that don't look totally goggly. The inserts bend against my face. Because they're translucent, they don't show up unless I'm pretty close to someone. Then they usually look at me funny. I don't go into a long explanation. If it's a boss that asks, I don't say DED, but say "I have very dry eyes, this helps keep them moist). I've found if I say more, I'm targeted for extra scrutiny and in some cases, because I also have had other medical problems and have had to miss work sometimes for as long as 3 mos, they find a way to force me out of the job. They figure I'm a liability because of another medical condition. So when I get a new job, I say nothing to my coworkers unless they ask me a question about them. Then I'm very brief. My closest friends are supportive, they will ask from time to time how I'm doing. My family is not. They think I'm exaggerating about the problems it causes. This year I had to go to Wilmer (at Hopkins) for 16 weeks, weekly, because of erosions. But they didn't know about it, I don't mention anything to them anymore. No point.

So - I try as much as I can to make it a non-issue. People don't want to hear about medical conditions, it turns them off even if they ask about it. So I just avoid talking about it if I can.

Since my eyes have dominated my life for the past 2 1/2 years, it's been very difficult. Even after I have been out of work for 8 1/2 mos because of medical problems, my family is still non-supportive. I don't even try to talk to them about any medical condition I have.

[No tears in ATL]

Yes, I agree with DCR and others here. I don't talk about my DED (dry eye disease) when I meet new people, when I'm applying for jobs, to most people. If someone asks why I wear "those glasses" (wear Oasis with inserts - look huge on my face, but they're the best I've found yet that don't look totally goggly. The inserts bend against my face. Because they're translucent, they don't show up unless I'm pretty close to someone. Then they usually look at me funny. I don't go into a long explanation. If it's a boss that asks, I don't say DED, but say "I have very dry eyes, this helps keep them moist). I've found if I say more, I'm targeted for extra scrutiny and in some cases, because I also have had other medical problems and have had to miss work sometimes for as long as 3 mos, they find a way to force me out of the job. They figure I'm a liability because of another medical condition. So when I get a new job, I say nothing to my coworkers unless they ask me a question about them. Then I'm very brief. My closest friends are supportive, they will ask from time to time how I'm doing. My family is not. They think I'm exaggerating about the problems it causes. This year I had to go to Wilmer (at Hopkins) for 16 weeks, weekly, because of erosions. But they didn't know about it, I don't mention anything to them anymore. No point.

So - I try as much as I can to make it a non-issue. People don't want to hear about medical conditions, it turns them off even if they ask about it. So I just avoid talking about it if I can.

Since my eyes have dominated my life for the past 2 1/2 years, it's been very difficult. Even after I have been out of work for 8 1/2 mos because of medical problems, my family is still non-supportive. I don't even try to talk to them about any medical condition I have.

Shutterbug, I'm really sorry to hear that family is not supportive. Well, please do know that you at least have your dry eye gang here whenever you need to vent.

[Guest]

Shutterbug, I'm really sorry to hear that family is not supportive. Well, please do know that you at least have your dry eye gang here whenever you need to vent.

I second that!!!

[Jade]

My experiences are so like all of yours. It's frustrating to me that I can only see your stories on a website like this. I need a support group of other sufferers more than anything in the world. This has been almost 20 years now for me since my refractive surgery. There are so many support groups for all kinds of ailments in my area, but none on chronic pain or dry eye disease. This condition seems to have been singled out world-wide to be invalidated on so many levels.