Just Suck it Up!

[Eli]

I'm pretty frustrated today. Do any of you have family members that continually marginalize your suffering and refuse to recognize it as a legitimate disability? Has anyone else had the experience of having family members look at you in disgust and say: "So your eyes hurt. So what? I don't understand why that keeps you from being able to do X, Y or Z!"
Not interactions that I enjoy especially.

[cristiandryeyes]

Yeah my mother constantly repeats that...She says that I need to get used to this as it's part of me now...stuff like that...but I do appreciate that she still encourages me to do things...I have a very obsessive personality and if it wasn't for her maybe I wouldn't be writing this now.

You are right though, How to focus on new things when you have constant burning eyes 24/7 ? Just tell me how. I'm so tired of this,...It's been a hell of an exhausting year for me...I'm still wondering...what's the lesson that I need to get from this ? You don't have idea how much I appreciate my life now, really I do, I miss so many things I used to do in the past...oh...all this worthless moaning...we just need to act.

[20/20_Hindsight]

My immediate family has never been that tact-less, as they have seen what shape I've been in and what lengths I've gone through ($$) to try and stop the pain and also the visual distortion I have from Lasik.

I have had other less close family members make that sort of comment and it is shocking. Thing is, just to hear "dry eye" doesn't sound like a big deal really. You have to experience it day in and day out, year in and year out to have a good appreciation of how it changes your life and is with you every second of the day. It has quite an impact on the ability to enjoy activities to the same degree as prior to dry eye. I've had other people not make an actual comment, but as I turned to walk away I saw them look at someone else and roll their eyes. Sigh.....

I'm sorry you've had to go through this. People can be insensitive. I've pretty much had to alienate myself from some friends and people and just do what I can when I know I can, with people who try at least to "get it", and don't make me feel worse than I already do. I rarely go out at night anyways since Lasik, and can only do it if someone else can drive me due to bad vision, so that in itself stopped most outings anyway.

[odydnas]

Eli, you're not along. It's truly an isolating disease and people can be so hurtful. The people that are telling you to suck it up probably can't even handle a week of what you're dealing it. It's incredibly frustrating when it's family members because you can't avoid them like you can avoid "friends". I don't have much advice except that it's life, and this is a valuable lesson for me to find out who truly does care about me and who doesn't and I will always remember it.

[Eli]

Thank you all for sharing your experiences. I appreciated your candor.

[dgreen97]

i've had this happen before where people you love tell you things that are hurtful and disregard some of your problems like that... i know how you feel about that. you should talk to them about it and explain how you feel

[Jaclyn]

Totally agree

I definitely think that most people I encounter are not that sympathetic. They see ads for, like, Visine, and think, "Just get some drops!" If only it were that easy! It is one of those things that, unless you've experienced it, is hard to really imagine. I mean, a couple of years ago, I could not have imagined dry eye could be so terrible.

Hang in there ...
Jaclyn

[cityhunter62]

Very few of my relatives understand my problem either. Not even my girlfriend, who lives with me! It's part of my fault, as I try not to complain and not to show my disease (never talk about it, hidding when putting drops or taking doxy...) cause I don't want to bother people with that... And my parents probably don't want to see their son suffering, so they just do not accept it and say that it's "all in my mind". Only my grandma actually understands it, as she suffered dry eyes when she was young and told me it was like hell... Until its problem simply disappeared just as it came. Lucky her ^^
My father has blepharitis, with eyes and eyelids always red, but no dry eyes (or at least no dryness sensation). So he cannot really understand, although he complains a bit about it sometimes. But I guess his discomfort is not as severe as mine...

[ringo]

My husband always tells me this and downplays my suffering.....so I just pretend as much as I can that I am not suffering, so he does not hurt me more; although he helps with the doctors and treatmnts and so on; but when it comes to sharing the pain with him, it is useless....

[~Lin]

For those of you with family that doesn't understand, Id like to recommend sharing "the spoon theory"

You can find it here from the website 'but you don't look sick' http://www.butyoudontlooksick.com/na...poonTheory.pdf

There is also a message board over there, I'm not sure if there is a dry eye section but there is a sjogrens section.

I think the spoon theory can relate to any type of chronic illness. Its great to help those that are not sick understand that life is changed, and is filled with choices that others take for granted. If I do this, then I'm going to have to give up this. If I go for a hike with you, its going to dry out my eyes and I'm going to have to lay on the couch in pain with compresses on my eyes... *

*I don't have dry eye, I'm actually here because my service dog has dry eye

[mike838]

Just reference to them this last season of baseball big papi from the red sox had missed a few games due to dry eye. Now I am not a huge sports buff but one thing I do know is that many athletes will play with sprains, breaks tears etc but to miss a game or two for dry eyes.... Yeah its that painfull! I did race pro mx at one point in my life and I can tell you that yes it is possible to deal with a sprian and to take the pain to make a race but I had many practice days where I did not ride due to dry eyes. Just my .02 on this topic....

[sazy123]

I dont tell people i have 'dry eye' when people ask.

I say i have a severe eye problem.... then they ask whats wrong with my eyes i just say, i have constant buring pain and they are dry.

Then if they enquire further (which they ussualy dont), i say dysfunctional tear syndrome, also known as severe dry eye.

That ussualy gets them!

Since i have been describing the problem in more abstract terms.. i get alot more sympthay.

If you just say 'dry eye', poeple do not understand the impact of the problem.