The pain is going to go away ... right?

[britgirl]

Since my DE started 8 months ago I have not had 1 pain free day. Every day is awful burning pain ... it's quite literally driving me mad.

The reason I haven't sunk into depression yet is probably because everyone around me have been convincing me it WILL get better. However, now that I've visited this forum and seen people who have been suffering for 10, 20 years + ... I'm starting to lose all hope!

When people say they've been suffering from DE for this long ... surely they don't mean they've been in pain all this time?!

[Rebecca Petris]

Since my DE started 8 months ago I have not had 1 pain free day. Every day is awful burning pain ... it's quite literally driving me mad.

The reason I haven't sunk into depression yet is probably because everyone around me have been convincing me it WILL get better. However, now that I've visited this forum and seen people who have been suffering for 10, 20 years + ... I'm starting to lose all hope!

When people say they've been suffering from DE for this long ... surely they don't mean they've been in pain all this time?!

Britgirl,

This fear is something everyone struggles with at some stage.

I think that there is a huge range of experience - but in one form or another, "better" is a consistent theme. There are those who find a solution and get completely better and go away. There are those who go through a protracted, escalating dry eye pain crisis, anywhere from months to even 2-3 years and then finally start getting the diagnosis and treatment and tools they need to get things under control... then they get better in the sense their tear film improves, their pain improves and their coping improves even though they're not 'cured'. There are those who have had dry eye for decades - at a more or less manageable level - then it escalates for one reason or another, they wind up here, and in some sense may be starting from scratch. And so on, and so on.

For someone to suffer 10, 20 years with both no abatement in pain and with no change in its impact on one's life is something I honestly think is so rare it's practically negligible. I think the danger on this board is to see only what appear to be the 'worst case' scenarios - and even in those, there is often much more to the story that you're not seeing. What you have to remember is that the community on this board represents a collection of exceptions in the first place, and mostly people who haven't reached better yet but will. Most people who are 'better' (according to whatever definition they need) of course move on.

To escape depression altogether is a real gift... and knowing the various ways this can play out can be a big part of that. Being armed with knowledge and then doggedly working away at improvement in every way is the best path to 'better'.

[socratese]

Yeah i had people telling me i'm going to get better too, thats ok, but how do they know really? Fact is most people have no idea how serious a chronic condition can be. For most "normal" people you get sick you go to a doc and then you get better soon. For us... we go to a doctor we don't get better... we go to another one same thing.. our families and friends go through periods of skepticism, silly psuedo-wisdom optimism, and then sink into silence about the matter.

A handful of doctors in the world barely understand our disease, but somehow people around us are instant experts about it. People in my family constantly assuming what I did to get the disease and WHAT THEy think will work to cure it magically forever! don't trust what anyone says about anything unless they have the knowledge from personal experience or study.

I just want to make one thing clear, though.. Just don't lose hope. You have to try EVERYTHING. Where there is a will, there is a way... impossible things turn into possible things often in our modern society of increasing technology and mass knowledge.

It's not fair... life isn't fair at all. When you get unlucky, you just have to try to fight harder to obtain your goals, even if that goal is just to be normal again.

People with chronic disease and pain get a rare glimpse at the harshness of reality. We have a gem of wisdom that is only obtained by few.
even if some of us never become pain free, maybe we can find a way to make life worth living. You have to get creative in that case, but I think it's possible. #1 rule stop comparing yourself to other people and live your life in your own way otherwise you will never be happy.

[chimera]

oh gosh i know how you feel ,when i first came here & read about peole having this for 5+ year that totally freaked me out! I cant imagine having this for so long! at 9 months Ive had enough!
But I think its best to not tell yourself it will improve b/c then you set yoursef up for disappointment, I just think some days will be good & some days will be not so good. Take it one day at a time as they say, though its hard not to fall into reminiscing about the old days when you were pain free.