how do you deal with others' lack of sympathy?

[ishkane]

I usually have a couple of bad days a week, bad enough that I become *really* light sensitive and no matter what I do, I have a painful burning sensation in my eyes. It's actually really horrible - I can't do much on those days. But because dry eyes (meibomitis in my case) is one of those invisible disabilities, I'm sometimes stunned at others' lack of sympathy. For example, I had a bad day today, so I spent much of the day with the curtains drawn, listening to an audiobook. And instead of sympathetic words, my mother tells me that I should go outside, and that I'm wasting my day/life by doing nothing (thanks mom, like I didn't know that). I just feel if I had a broken leg or something, people would be a whole lot more understanding.

Can anyone relate? Any advice?

[Guest]

I can totally relate, Ishkane. It sucks, I know. All you can do is to do your best to explain exactly why it is so bad - exactly how the pain/discomfort feels to you when you're having a bad eye day... in time, you'll figure out what words are best to use to help others understand your eye problems.

Even with almost 6 years of "practice" in trying to explain this to people, I still get the odd person who honestly seems to think they totally get it, when in fact, they have no clue. ex. the perfectly normal person at work who says "oh yeah - I totally understand.. I have dry eyes too" This person has perfectly white eyes, reads and uses the computer as much as they want, says they rarely experience any problems with their dry eyes, other than the need to use re-wetting drops once in a while when they occasionally wear their soft contact lenses. They most definitely do not understand my kind of dry eyes.

Fortunately, that kind of person is in the minority, and even if I do run into one of them, it's usually not because they are a jerk... they just honestly don't get it.

Anyhow, hang in there... it must be especially tough to have that reaction coming from your mom...

[Súil Eile]

It can be absolutely infuriating. Being in pain while having to justify it can make everything seem ten times worse. I think though, that sometimes it's frustration on the part of those around us that they can't do anything to help. Particularly with your Mom who is so used to looking after you - to not be able to understand what you are going through and not be able to help must be tough on her too.

I know talking can be the last thing you want when it's time to close the curtains and shut down for a bit; but maybe talking to your Mom more about how your eyes make you feel (physically and emotionally) and how certain things make you feel better/ worse might help. Is there something she could do to help you, so that she feels involved? Maybe something as simple as making a cup of camomile tea or a compress? That way she can mother you and you can feel that at least someone is trying to understand.

Hope your eyes feel better soon

[y-gwair]

So sorry to hear that. I think that sort of reaction is fairly common among the older generation unfortunately, a sort of assumption that any condition that isn't instantly obvious, like a broken leg, can't be that bad and it will all be ok if you stop moping and get out into the lovely sunshine, argh (currently very limited on going out due to severe photosensitivity of skin, as well as eyes, so I'm living a troglodyte existence at the moment too).

When I told my mother about my thyroid diagnosis, the first thing she said was, 'If you'd listened to me and done x, y and z like I begged to you, you wouldn't have this now'. I was very angry about it at the time, but I suppose it was her way of dealing with any feelings of guilt. Some people just can't deal with any kind of physical disability, they are either embarrassed or don't want to think about it. I once worked with someone who was very softly spoken; being deaf in one ear I explained this to him one day, as I felt a bit embarrassed constantly saying 'Sorry, I didn't quite catch that...'. He just looked through me and carried on as if I hadn't said anything, I found that quite disturbing. I honestly don't know how you get through to people. I sometimes post updates about my condition on my facebook page, mainly to explain why I haven't turned up to some exhibition or meeting, but no one ever comments or sends messages.

I think re. eyes, it's better so say something like you are suffering from chronic eye inflammation, which is true. Dry eye or blepharitis just sounds really trivial to the uninformed, even though we all know it's a seriously painful and debilitating condition.

[PotatoCakes]

There are those that will never understand and don't really want to (you know the people, if you break your leg they tell you about how they once broke a finger nail and it was the end of the world). Then there are those who want to understand but can't fully relate because they have no way of connecting their brain to what you feel. It's not that they don't want to but they can't. Chronic issues, whether it's pain, autoimmune disorders, or whatever are their own special kind of hell. It's not just physically disabling but emotionally disabling at times and there's no way to really describe it to someone that hasn't experienced it. I suppose the closest you could get to explaining chronic is to use the example, if someone continuously tapped on your chest (or scratched a single place on your arm), forever, long after you started getting a bruise or the skin began to abrade and then continued more, that's what chronic is like. It seeps into your psyche and some days you are strong but others you feel like the world is ending -- or at least you want it to.

The actual pain or ramifications of dry eye are a bit easier to explain but even that is tough for people to understand. I usually tell people my eyes burn and mention my serum drops, explaining that they are made with my blood (that usually freaks people out a bit). As part of my eye management, I have an alarm set to go off every hour to remind me to put eye drops in; after people hear it go off a couple of times and wait the 2 minutes I have to keep my eyes closed after drop administration, they may not understand the pain I'm in but they do get a slight idea of what a nuisance managing the symptoms are. If I'm out of the house long enough to warrant carrying my serum drops, it's even more effective because I whip out my Thermos to put my drops in.

Depending on my mood, sometimes I mention that this whole thing is really scary to me because if we don't find a good way to manage my dry eye, I could end up having to have a corneal transplant or worse, have to have my eyes sewn shut. Even if they don't understand dry eye, the idea of having one's eye sewn shut causes most people to pause.

Of course, none of this matters for people that don't really care and sometimes it makes me feel like a bit of a zoo animal (look at the freak!) but for those of my friends that do care, they ask, learn and then we try to take my mind off of it because it's not healthy for me to dwell on it too much, particularly if I start crying tearless cries and end up with uber-dry & red & puffy eyes for the day+ that it takes my eyes to recover from crying.

[LaDiva]

I know just how you feel. People who have never had really dry eyes have nothing with which to compare the experience. Some of my friends have suggested eye drops and they cannot understand why I am not out and about more! LOL That being said, dry eyes are an awful, debilitating problem. Best of luck to you, and best wishes.

[kitty]

I stopped looking for sympathy or even empathy long ago. No one can understand the pain unless they have lived it. I mostly live it in silence. My hubby is supportive in that he waits until I go to bed to turn on all of the bright lights. Beyond that, forget it. This website is where I get the "hugs" that I need to keep going.

[Colin P]

What is it with Mum's ???.. Any complaint in medical history, my mum's had it worse or something similair that was also worse.
Her most recent quote, was "my freind has a freind has dry-eye and just puts a drop in"; meaning "why cant you"??.
It was my birthday in April, and she sent me a card with a huge big eyeball on the front of it with some joke inside....
.................................................. .................................................. ..
My wife aint much better! and complains were spending too much money on different drops, And if i go quiet for a while "whats up with you now?" or "youre not lying down in the bedroom again are you!" "what about us (me and the kids)- youre making us miserable".
Not only have i got to put up with this curse (dry-eye, not my wife) i battle through work then get home and have to tread on egg-shells, and keep-up a smile.
.................................................. ......................................
My dog (see avatar) however still prefers me, and always comes to me first! ...HA!..
.................................................. ....................................

[irish eyes]

I stopped looking for sympathy or even empathy long ago. No one can understand the pain unless they have lived it. I mostly live it in silence. My hubby is supportive in that he waits until I go to bed to turn on all of the bright lights. Beyond that, forget it. This website is where I get the "hugs" that I need to keep going.

I agree - these days, I don’t expect sympathy either. I got too many uninvited dismissive remarks so I distanced myself from certain people as their comments were taking their toll. It felt as though I always had to be ready to justify myself.

My eye problems still `pop up’ in conversation but now I’m reasonably adept at recognizing the `question behind the question’ in the speaker’s tone of voice. (Do they really want to know about my eyes or are they going to follow up my answer with some flippant comment?)

I politely steer the conversation in another direction. Typical comments:

Eyes are precious, my (mum, dad, other person) wears glasses
Why not go to my optician – she will prescribe you the right glasses
Life is full of pain and pleasure; everything has its reasons.
Have you tried using eye drops?
What's wrong with you, can't you take a joke?
How can you let a little thing like that bother you?

[Mawsky]

Well it sounds like I'm not alone, I've been at times shocked at people who I consider my friends being less than understanding, unfortunately I get this from my husband too, which is the hardest, one day I was getting ready to go for a walk on the trail near our home with a friend, of course I "dropped" up before leaving the car, as I pulled my drops from my purse took off glasses and tilted back my head to drown my eyes I murmured, darn these dry eyes, and my dear friend replied, "well at least you can see," I was really hurt at the time, and then I realize that this is the same friend who said to me after I lost almost 50% of my hair (alopecia areata) its no big deal it will grow back like last time. I had to tell myself that this person just lacks empathy, even tho I love her dearly, and even tho I have been with her out for coffee and she has seen me put drops in every 5 minutes, and then aks me "how many of those drops do you put in?" I've explained to her that I have NO TEARS!, but I don't think that she gets it, even about my hair, I've explained to her that my hair is very unpredictable, it could all grow back and never fall out again, or I could lose it all. She is not the only one of course I've run across this with many people, it's not that you want people to fall all over you, or constantly be complaining about our eyes, but when we are feeling down, or frustrated, it would be nice to have a understanding ear. That's why I'm so glad I found this forum, I know that you all understand, and it helps so much to be able to share.

[lizibet]

Well, I now no longer even try to explain. I use other excuses like migraine, etc that people can more readily accept. Try not to be too hard on other people, because unless you have walked a mile in someone else's shoes, we are all guilty to some degree of not really understanding the other person, just human nature I guess.

[cebeth]

Ishkane,
I have had recurrent corneal erosion now for 2 years. It is very painful and I too have to stay in my bedroom the days I have erosions. Some people get it and some don't. It is just human nature. I am blessed to have a supportive husband and a few really good friends that get it. Those that don't I try to forgive and not talk about it much to them. Some people are just jerks and I try to stay clear of them. We all understand.
Beth

[avee]

Couldn't agree more! I've had hard times explaining what's going on with me, too. Sometimes I just say that I have sore throat or headache or something that people understand.