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**SusieD** · 17-May-2006, 11:45

Your post strikes a cord with me. Im very sorry you are going through this rough patch.

So Im not the only one who's relationships are affected by this condition. Granted I wasnt married but things were serious and dry eye (and my 'obsession' with improving them) got in the way big time. I dont even feel like I have room in my life for another relationship at the moment. Just turning in for work and trying to keep up with my studies is taking all I have right now.

I used the word 'obsession' because sometimes I feel (or am made to feel) like I do obsess about this, and maybe I do. Im not implying that of you. Whenever I even mention my eyes to someone in my family I swear I can see them 'roll' their eyes a little! Its not that I think for a second they dont care, its just that they cannot understand and it doesnt matter how descriptive I am. I feel as though I have to justify myself all the time. Money spent on drops, appointments, plugs, more appointments - you name it. Time spent on it - travelling to various places to see various doctors.

Actually, to be fair, I should say my mum has been great - I dont think she 'gets it' but she tries really hard to understand and is often the one who will accompany me to appointments etc. I do think she knows how important it is to me - to feel that I am doing everything I can. Although my mum thinks Im mad to think of travelling all the way to the US to see a doctor! Actually If I do end up doing this - I think I would actually want to go alone, feel like I need to do that.

Is it your wifes job that is the main issue with regards Europe, if she has left twice maybe she is worried that they wont take her back a third time. We become so absorbed in our issues that sometimes we forget that others are having to make sacrifices all the time too - and maybe after a while, because they dont understand, they resent it a little. I dont know. I dont know you or your wife personally so Im just going to shut up before I go and offend you or something! (Don't mean too). Its just I know I sometimes dont think about things from others perspective.

That said - you do need those who you love to be behind you and support you - at least one person who can be there.

Anyway sorry for rambling - its probably completely irrelevant to you but there you go.

Take care. (And I hope you can resolve this - together).

**kitty** · 17-May-2006, 12:12

Coping mechanisms?

Neil, I'm so sorry you are having such a rough time.

Who's your best empathizer/sympathizer/helper in all of this ... and why?
So far, no one but the people here at DET. I have one close girlfriend who does ask "how are your eyes", "what did the doctor say", "isn't there anything else you can try"? She is the only one. I think the reason is because she has many chronic health problems herself. She has started to open up to me a lot more about those since I was diagnosed with DES and started sharing my problems with her.

Who's your worst ... and why? What have you tried? Have you had to cut ties??
Everyone else. I have not cut ties, but I have stopped talking about my DES with most people. I have much reduced my social life because my eyes won't tolerate the environment. I just tell people I am not feeling well. They seem to understand that.

From what I have experienced, those who have never had to deal with a chronic illness or disability themselves or with their immediate family cannot begin to understand. It is those people who tend to distance themselves, change the subject-because they just don't know how to deal with it. They don't know what to say or how to respond. Sometimes, even those who have had personal experience with chronic disability still do not feel comfortable dealing with it.

Just because your wife is in the medical field does not mean she is comfortable dealing with chronic health issues in her immediate family. As a nurse, I had a much easier time having empathy for patients who are strangers than I did with my own parents when they started having chronic health problems. I don't necessarily know why that is. Maybe that is how I learned to cope with seeing so many sad and devistating things on a daily basis, and dealing with families who are having a hard time coping.

Maybe your wife just distances herself because that is how she copes at work when dealing with or difficult things? Maybe this is the only way she knows how to deal with it? I do admit that some of things you describe sound like she is not concerned, and she is being less than curteous, but perhaps that is not her intent? How does she feel about your eye condition? How has it impacted her life? How can she support and help you? Those are good questions for counselling and I wish you much luck with that.

You are not alone....

**neil0502** · 17-May-2006, 12:13

No, Susie. It was very relevant and very helpful. Thank you.

I try very hard to stay closely attuned to my wife's life, her work, her friends, her goals, and her dreams. I try very hard to support them at every turn.

When we DID sort of talk seriously about the Europe thing last week, she admitted that she had NO doubt that her employer would take her back unhesitatingly. She can do no wrong in their eyes ... and they're short staffed ... and they don't pay very well.

That, I told her, is why I found it so strange that the work was 'creating' such an obstacle.

Momma always told me: when the REaction is vastly disproportionate to the action ... it's something else at play. Does that make sense? In other words, the REAL issue we're facing probably isn't Europe ... or her job. It might be that this life with me is more challenging, less rewarding, or ?? than she's comfortable with.

You used the word "obsessed." So did my main ophthalmologist ... once ... back in 1998. But after we solved a few of my then primary problems ... and I rebuilt my life, got married, got a great job, etc., etc., he apologized, and promised never to think in those terms again. He's a professor of ophthalmology. He also promised to (and has) tell my story to his students so that THEY won't judge so quickly and harshly.

Being crazy doesn't make our symptoms. Having our symptoms makes us crazy

People aren't "obsessed" with their cancer, are they? Or with their Sjogren's Syndrome ... or with any of 1,000 other chronic conditions? Why should we allow other people's failure to understand our situation to detract from our legitimate desire to get better? We shouldn't.

If somebody's heart condition means that--if they walk 50 feet--they'll stroke out--THEY aren't obsessed. If WE take excessive risks ... we risk medical damage, too. It's just not as readily grasped by others as the "biggies."

I understand your thought about journeying alone across the pond. Sometimes, for me, there is a sort of pilgramage thing going on here. Sometimes, it would be better to go with another DEZ-type than to go with our significant others. Sometimes.

I'm sorry that this imperiled your relationship as it sounds like it did. I'm glad that you, too have one of those mom's who--it sounds like--is squarely in your corner ... no matter. I've got one of those. They rule.

Thanks for your kind and thoughtful response, Susie. IF you journey to the States ... may you go back well, healthy, helped, and healed.

**neil0502** · 17-May-2006, 12:21

Thank you, Kitty.

It's great to get another RN perspective here. I do think--all the time--about how people in the field MUST learn to create a manageable balance between compassion and being sucked in ... or they can't function in that environment.

It's so, so difficult to say, though. Does she care, intellectually? Sure. I think you're also incredibly right that it's very different when you're on the clock than when it's a loved one. Again, that dispassionate role isn't there any longer. It may make people uneasy.

She's also remarkably healthy, so you score another point on that one. She had PRK a few years back, and had one really, really bad eye day ... but it's a distant memory.

How has it impacted her life? It's taken a woman who has--in her life--thrived because of her goal-oriented nature and summarily taken away her ability to plan for the future because ... the future hinges largely on my eyes--what we can do, where we can live, the next round of appointments, expenses related to the eyes. It has to suck. I wish I could make it other than what it is. All I've found to do is to keep promising that this isn't "as good as it gets," but that--when this round (Europe) is over ... we'll pursue what I'm sure is her dream: we'll find a habitable place to live (dry eye-friendly), buy a house, get some dogs, and live like ... those ... um ... normal people

I promise.

That promise, however, must seem pretty weak, pretty thin, and pretty far-off for her. I can only imagine.

As to talking about it with others: you're right there, too. Those who ask, I answer. I try very hard not to rope people into it knowing that it makes so many so uncomfortable. I use the term "retired" rather than "disabled." It's so much easier to have people think you got lucky and got rich at 42 then to have to wonder, inquire, or hear about the ugly truth.

It's not so much that I'm uncomfortable with it ... though I am ... it's more that I hate to make people so awkwardly uncomfortable and have them feel obligated to say the right thing ... when there is no right thing.

Thank you again ... and may those closest to you always lend you an ear, their concern, and their support.

**SusieD** · 17-May-2006, 12:37

Thank you. You know I wont even call my dry eye problem 'chronic' - I refuse to! (its that stubborn streak you see). For me, to call it chronic means I will never get better and so may as well give up - and I dont think I could ever do that.

Yes, my mum is great, when I think about it, she has supported me in more ways than I realise. Wow, Im feeling really guilty now, I must do something special for her to show how much I care and appreciate everything!

PS - Im am training to be an RN - after giving up a computer orientated job last year (nothing to do with eyes). However I wonder everyday if Im doing the right thing - I dont think I could have picked a more stressful career change. I dont make life easy on myself at all!

**Rebecca Petris** · 17-May-2006, 13:49

Back when I first started lasermyeye.org, I wrote an article for friends and family of lasik complications patients, aimed at helping them understand what their loved one was going through, why it was so hard, what they needed to understand about it and how they could help. I remember getting comments back from a few who actually printed it out and handed it to their spouse and said it was helpful. I am wondering if something like that could be helpful for dry eye patients. I know it feels like they "ought" to understand but they so often just can't. Getting them in contact with others who have gone through what you're going through might also be helpful.

Personally though I also think that the expectations game can just be a permanently losing battle for one reason or another. Sometimes quite legitimate reasons. Some people just aren't good at this "supportiveness" thing or they get real fatigue issues. Some people have other reasons why they can't. I don't get, or expect, any support from my husband about my eyeballs and almost never even talk to him about it, not because he isn't a caring guy (he is in fact a very gentle kind person) but because he has his own health issues, including memory loss. So I've had to learn to mould my expectations to be realistic - basically looking at this this way: What's more important to me, nurturing my overall relationship with my partner or expecting/persuading/compelling/coercing him to meet XYZ specific need of mine. Always an ongoing struggle of course but looking at it that way helps me.

**calli66** · 17-May-2006, 16:59

Neil-sorry to hear about the rough time you're having.
My spouse is sympathetic, but definitely doesn't want to "hear about it" all the time. Sometimes he picks up on my discomfort (like when standing in line at the grocery store)--maybe I'll have an unhappy look on my face. Heck, even the cashier and the bagger notice, too. He'll say, "Is something wrong?" and I'll reply, "All I can think about is my eyes."

People with "normal" eyes just don't "get it." I hate hearing "Yeah, my eyes are pretty dry, too--" knowing the other person has no clue what dry eye sufferers go through.

C66

**neil0502** · 17-May-2006, 17:38

Thanks, Cali. Thanks much.

There's that infernal grocery store again. You're so right: maybe the most self-conscious that I ever get is in that three-minutes that I'm--literally--eye-to-eye with those two kind folks ... after doing time in the grocery store -- among the worst of the worst.

At 42, I have the distinct feeling I'm in a pretty clear transitional phase. I still have the wants and desires of my youth ... with inklings of what all this oft-touted "wisdom" is supposed to bring ... but I'm not quite there.

I think about "letting go of my expectations" as such a negative thing ... but maybe it's not at all. I've seen some pretty rock-solid multi-decade marriages where I just know that they've each done a lot of it ... basically for the reasons Rebecca said:

Originally posted by Rebecca

What's more important to me, nurturing my overall relationship with my partner or expecting/persuading/compelling/coercing him to meet XYZ specific need of mine.

I'm going to get all cross-legged on my meditation cushions tonight--maybe for the first time in far too long--put a couple of high-powered hyaluronic acid drops in my eyes, light a candle or two, put out the lights, and put on a guided visual imagery cd. The pain does have a powerful way of inducing anxiety ... and anxiety ... well ... doesn't have much to recommend it as far as relationships go.

**Flick** · 17-May-2006, 18:35

Neil,

Sorry to hear about your difficulties. Dry eye is so frustrating because it affects your daily life in such a serious way, but is grouped by others in the category of everyday minor nuisance. I'm not married or even in a relationship, so my thoughts are probably really worth $.02, but I'll give them anyway, because I want to try and help you since you always help others (including me) on here.

I'm guessing that one of the things that your wife is attracted to in you is your courage in dealing with your eyes and your determination to make things better. Especially since you were dealing with your eyes when you first met (I think?), so it's not like it was a surprise later on down the road. I know I'm always inspired by people that meet their physical challenges head on and full force, which you certainly do.

Maybe you're just going through a tough time in your life (worrying about Europe trip, moving to Colorado, etc.) which unfortunately is coinciding with your wife also being in a bad spot. Which is interfering with her ability to show her concern over your eyes.

This could be a blessing in disguise, in that you guys seek counseling and work through some issues that might have boiled beneath the surface otherwise.

I hope things get better and I'll be pulling for you.

Flick

**neil0502** · 17-May-2006, 19:45

Thank you, Flick. You know ... for a guy who set the bar pretty low about what sort of insights I might expect to derive from your post ... I'd say you under-promised and over-delivered pretty dramatically

.

I think you're right on about every count (including the fact that I was, indeed, disabled when she and I met). I never really gave much thought to the notion that maybe I've projected competence and confidence in the pursuit of these medical issues for so many years that ... to somebody who didn't really know me ... there might be reason to wonder if I ever get down ... ever need help, though clearly, sometimes I do.

Like most of us ... I probably seem "pretty okay," by and large, in large part because I try so hard not to lash out at those who had absolutely nothing to do with my predicament.

On a decidedly positive note, I got an end-of-day e-mail from one of my dry eye docs. In short, he (finally) seems convinced that my assessment of my situation (benzalkonium chloride-induced toxicity) is spot on. To that end, he's going to "take up the charge--" reaching out to people that he knows who work with Pflugfelder and who can perform the confocal microscopy and other diagnostic test to evaluate--at a cellular level--the ongoing issues with my eyes.

With luck, I'll jet to Texas before France, and maybe get a better handle on what's what--perhaps bringing those results to Paris with me.

I was really touched by your opening comment, about my having helped you and others here. To the extent that my really lame eyes will let me, I'm processing a ton of information. In learning just a bit about each of you, and about these conditions, generally, it's my hope that nothing that I read is worthless.

Ultimately, I'd--of course--like to fix myself--at least to restore a great deal of my no-thought-required functionality from a decade or so ago.

On that journey, though, I would be really gratified if anything that I've found can make a positive difference in the life of somebody else who's got their own similar challenges.

Thanks again....

Neil

**crispen_2000** · 17-May-2006, 19:48

Sorry...

Influenza is straightforward - one day you do not have the responsible virus in your system, and another day you do.

Dry eye isn't like that. Most of the time, dry eye is a chronic illness.

"Welcome to pain", Ovid once wrote, "for you will learn from it."

What have I learnt?

I have learnt that society (and often doctors!) don't have time for sick people. I get the impression that a lot of eye doctors almost "avoid" dry eye patients. Before I found a really good doctor, it was almost as if I got whip lash from going in and out of their offices so fast. They didn't want to spend time with me. They were puzzled that a 20 year old male could POSSIBLY have dry eye. And family and friends don't want to be around measureless pain. I have stopped talking to them about it.

However, one loves and is loved in great pain, and one is alive in the experience of it.

It's like the Russian saying - "When you wake up feeling no pain, you know you're dead."

I'm sorry that you've had a bad day, Neil.

I don't think there is anything I can say that will help you. I think the best hand for support is often your own. If your wife doesn't have time for you, I think, perhaps, you should consider going to Europe by yourself.

Also - consider this - I think that "time away" from one another in any relationship, sometimes, is the healthiest thing for a couple. It's not done often enough. In marriages, I believe it's always "US going on a honey moon, US having children, US doing everything together". Sooner or later, each person will probably ask the question - well, who am I? If you can get over this stump, life will be easier for any couple.

You are someone who is always in pain. This is a fact. It's hard to offer reassurance when you give someone this information.

If you have to go to Europe by yourself, I would say go to Europe by yourself...or invite a friend to go with you, if they can spare the time...

Tomorrow might not be better for you. But I hope it is.

**neil0502** · 17-May-2006, 19:59

Wow, Crispen. In the "accumulated wisdom per years lived" category, you and Flick just took home the gold. Again, I'm deeply touched and offer my heartfelt thanks for your sage comments.

Sadly, I totally agree with you ... or with Ovid

In wine, there is truth ... and in pain ... there is wisdom. Tough, tough ways for us to learn some valuable and powerful lessons, though, huh?

I have a sense of what it means to be fighting your fight, too. I was born with bad eyes, and have been seeing ophthalmologists and optometrists--quite literally--since I was about two. You're right about the dry eye part (to which I come only fairly lately), too: it makes your average eye doc just a little uncomfortable, too. I think they know that ... on average ... they're not going to make you happy--at least, not like giving you back 20/20 vision with glasses does.

I also totally agree with you about the concept of "separate time" in relationships. I'm a fairly experienced traveler, and it is my passion. I would love to be able to "show" my wife wonderful new places, but ... it it's tough for her, or tough for us ... then you're right: different choices should be made. She left this evening for a five-day conference. That will certainly give each of us some time to reflect ... away from the tensions of the moment ... and time to take stock of our lives.

Heavy stuff, huh? Maybe I should run out for a pint of Ben & Jerry's if it's gonna' be that kind of night!

Again, my hearfelt thanks. I sincerely hope that I can return the favor at some point on this board. More accurately: I hope you're all better long before I have the chance to do so.

Neil

**Flick** · 17-May-2006, 20:01

"no-thought-required functionality"

Perfectly put. That is exactly what I miss most, and what I want back so badly.

You're welcome. Hang in there. And what a perfect day to get a good email from your doctor.

**shells** · 18-May-2006, 18:20

Hi Neil,

I'm so sorry to hear of the problems that you are having in your marriage. I also have experienced alot of stress in all my relationships due to my dry eye pain, the way it has limited me, and also the depression it has caused. I'll have to agree with some of the earlier posters that absolutely NO ONE understands this except other people who are dealing with it. People on this site have been BY FAR my biggest support system through my ordeal, and I'm not sure how I would be making it without them.

The only other people that even remotely understand (or try to) are my mom and my boyfriend , and even they still can't always provide the support I need. It was much worse in the beginning because I felt like they thought what I was going through was no big deal. If I had told my mom I had some disease that she had heard of, she would have researched the heck out of it and learned everything she could. But I tell her I have dry eye and she didn't seem to think it was a big deal. Finally, I had a very long talk with her explaining my daily routine and how it has been altered since my lasik and how my dry eye is with me every second of every day. I sent her the link to dianat's story, which I think is very well written and really lays it all out. After that she was more understanding.

Obviously, your wife knows how serious your eye problems are, so that is not the issue. I'm very sorry that you feel you do not get the support that you need, and I do hope that you can work through this with her and perhaps counseling will help. I'm not married, but I live with my boyfriend, and although we are getting through OK so far, it certainly has put a damper on our relationship. I am the kind of person that likes to talk about things, and I think I probably bombard him too often with eye talk. I try to give him breaks from it, and he still goes out and enjoys himself even when my eyes don't allow me too. I do feel that he does deserve this time to escape, it just hurts that I cannot escape as well. I really haven't found out quite yet what I should expect from him, and when I am asking too much. It is still something I am working on. I do feel that your wife should be offering you more, but I suppose everyone is different, and like some people suggested, perhaps this is just her way of dealing with things. When we hurt, it hurts those around us. I am also a very compassionate person, and do feel that if the tables were turned, I would be able to offer better support than I have received from those around me. For now, I just try to make the best of it, and not let myself get angry at those around me for not understanding.

Again, I am so sorry that you have to deal with these other problems on top of your eye issues. I know I've rambled on, and probably didn't say much that will help, but like Flick said, you are always such a help to the rest of us, so I thought I would respond. I really do hope that you and your wife can find a solution, and that she can give you the support that you need.

-Shelley

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