How to communicate other people about our condition ?

[André Pereira]

How do you communicate our problem and our limitations to other people ?

I'm having some problems , especially at work , because some days I can not be productive . But I've told you many times that I have an eye problem . But this is insufficient .

I asked my doctor for a certificate about my condition . He does not know what to put . There is no code. No formal description.

Anyway, I 'd like your help to write a paper that describes our situation to others ( personal or professional life ) .

As one user said here on the forum , this is an invisible disease and is difficult to make others realize how much we are affected by it .

I 've read a document here that was kind of a letter to friends . But I can not find anymore.

I have also read something that compares our limitations to a person who has heart problems . I do not know where I read .

Finally , I would like suggestions on what to put in that document .

Thank you!

[Guest]

I never had anything formal at work for this, but I did have to verbally explain what was going on with me, so they'd know why I wasn't as productive as I would have been otherwise.

I just got very specific about how the eyes were affecting my ability to do things:

"My eyes were so inflamed after my last shift that they were too sore to keep open the entire drive home - they just shut down and seemed to be making no tears at all - it was very painful to blink, every single blink felt like my lids were scraping against my eyeball. Finally it was so bad I had to pull over and cry, since even my eyedrops weren't helping - something about the watery tears from crying lubricated my eyes enough that I was able to make it home, as long as I kept my eyes mostly closed and looked through my lashes to drive" (err, I know... not safe... didn't think I had a choice at the time though)

"I can't tolerate the 'wind" from simple things like walking around the store - I have to walk slower to prevent the breeze from hurting my eyes - sounds crazy, I know... but my eyes are over-the-top freakishly dry and it can be very painful" (this was before I had started wearing my sunglasses Wiley X's to work)

"I try to minimize the stress on my eyes so I can work more by walking with my eyes closed whenever possible, for example, if I'm walking from the cash register to behind the counter, since no customers can see my face at that point, I close my eyes - I've memorized how many steps it takes, so I won't crash into anything, no worries!"

"A 4-hour shift seems to be my limit, and I can't work more than 2 days in a row - my eyes just shut down from the inflammation of stressing them at work - the concentration causes me to blink less I guess, and that makes my eyes so much more dry and painful - if I work 2 days in a row, it might take my eyes a week to recover to the point where I am functional again (that's what happened 3 weeks ago when I tried to work more), but if I do shorter shifts, and take a day off in between, although I have to keep my eyes closed as much as possible for that day off, at least my eyes are able to then tolerate work again the following day"

"When I go home, I don't read books, I don't watch TV, I avoid the computer, I rest my eyes by keeping them shut for about 2-4 hours per day - if I do this, they are less inflamed and can tolerate a shift at work without shutting down to the point where I am unable to keep them open at all due to the pain they cause me"

"I know this must sound crazy, I'm a total freak as far as my eyes are concerned - they are just so over-the-top sensitive - every single blink is so intensely uncomfortable as the lid scrapes across my eyeball, my eyeballs stick to my eyelids overnight so bad that I can't open them like a normal person without ripping a layer off - I wish I could do more, hopefully if I baby them they will recover"

Heh... I read the above and it sounds so crazy, but was all true when I said it - that was during my awful flare up, which affected my going back to work in early 2010.

I found that by being very specific, it helped people to understand exactly what I meant. Try thinking of the exact specific things that your eyes are preventing you from doing and exactly WHY they are preventing you from doing it - if your boss has a heart, they will understand once you explain it this way.

[LaDiva]

They don't understand André. Unless you have moderate or severe dry eye, there is no way of knowing. Same goes for our eye doctors. Sorry, that isn't a very good answer, but it is the truth. The closest I can come to explaining my dry eye is that it is like having a hair or eyelash, or sand in your eyes all of the time, and it hurts, not a little but a lot. Be assured though, that whatever you tell people, they will ask "have you tried eye drops?"

[André Pereira]

Saag, thanks for the reply! =)

Really, being specific can be the best solution.
I do not know if trying to touch the hearts of people in work will be efficient.
I thought about bringing some information to my doctor be able to put on a certificate.

But really, I was touched to read your routine.
Let me ask you. Today you are better right?

ladiva
This is the standard reaction from people when we tell about our problem.
How is an unusual condition, this is normal reaction.
I wanted to do something that could explain some things I linger many conversations to explain. I will not quit distributing it to everyone. Only for some people.

[Guest]

Saag, thanks for the reply! =) ... Let me ask you. Today you are better right?

I am a million times better than I was back then, BUT, still a million miles from normal. That being said, I'm now able to do most of the things I'd want to do if I didn't have this problem, as long as I take precautions (ex. wear my Wiley X's, avoid dry-air environments as much as possible, all the usual stuff etc.)

Prior to quitting my job in May (so I could run away to the tropics with my family hehe), I was able to work as much as I wanted without trashing my eyes, so that was good.

One more thought I wanted to share as far as explaining things to your employer goes - when explaining what you CAN'T do, try to always bring it back to what you CAN do for your employer, how sorry you are that you can't do more, you really want to get back to "normal" as soon as possible and are doing everything you can to get there so you can be more productive at work. It's human nature to be self-interested (for some more than others), so appealing to your employer's self interest and making it very clear that you are NOT just thinking of yourself, but of how you can help THEM can help I think. Hard to do when you may very well be an emotional mess about your eyes, frustrated beyond belief etc., but I think it pays off to let your employer know that despite your eye problems you still DO care about your work and doing the most you possibly can.

Ok, one more thought after that... then I think I'm done

Why do you want a medical certificate? Is it required for your employer to accommodate your needs? Is your boss refusing to accommodate you? If your boss is being cooperative, then maybe save yourself the hassle of obtaining a doctor's note and just deal with your boss by explaining things on your own.

And of course, if your boss is being heartless, then by all means get that doctor's note if you think it might help you!!!

[DryInDenver]

Andre,

Rebecca had a great post about a doctor who gets it (http://www.dryeyezone.com/talk/showt...ght=#post93414)

Don't you wish...

... all eye doctors "got" what dry eye is like as well as this one does?

The severely dry eye patient is constantly aware of their condition due to extremely uncomfortable symptoms. Not only is management of their affliction a problem, but even control is a challenge.... They often will refer to their life in two segments of time...before they encountered this problem and since they have had this problem. Dry eye rules how they live, where they go, limits what they do and how long before they close their eyes to find some level of relief

.... I also like this part. I wonder how different one's doctor would feel if s/he submitted to this?

People often wonder how a seemingly insignificant thing as a “Dry Eye” can be much of a problem. Even attending clinicians often lack the empathy these patients call for and deserve. A simple demonstration is not difficult to arrange for the skeptic to be convinced.... I ask the volunteer to give me just 20 seconds of his time, whereby I prop his eyelids open with my thumb and index finger of one hand, and use my other hand to fan his eye with a note card. It usually on takes a matter of seconds before the person would like to end the experiment, but we try to complete the task for a 20-second duration. At the end of that time, the recipient of this cruel treatment has simply experienced the effects of corneal drying; just twenty seconds worth - and he is glad it is over!

Additionally, this study relates dry eye to heart problems and may be what you have read http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3235707/

Quality of life can be severely affected by dry eyes. Utility assessment quantifies patient preferences with regards to any health state or disease, allowing comparison across patient populations and across disease states. Patients with moderate-to-severe dry eyes report utility scores similar to patients with moderate-to-severe angina, or hospital dialysis [11,12]. Lesser degrees of dry eyes are also associated with significant morbidity, with utility scores of patients with mild DED equivalent to those who suffer from severe migraines [12,13].

Regarding performance at work, I think SAAG wrote a great post above and completely second everything said about focusing on what you CAN DO. It's important that you help your employer understand the battle you are engaged in with your dry eyes so you can get some cooperation in ways to work through the disease. But keep in mind you want to impress your employer with your resolve and dedication through this. Get your sympathy elsewhere, namely from these forums, friends, and family. Show your employer how tough you are and make sure they know how your contributions will continue to help the company. In my experience, sympathy at work has only come when I don't ask for it and don't want it. These forums are filled with people like SAAG that have excelled in their careers despite dry eye. Just look at the amazing things Rebecca has done for us all while she has been at combat with her dry eyes.

[runnergirl]

Work is probably difficult for everyone. I am blessed to have a work partner that knows all about what I am going through and if I am having a eye day, she steps in and helps me. My boss does not know that work is difficult for me. I work around it. I am sure everyone is different.
My boss does know I have severe dry eye and blepharospasm, however, I told her that it does not effect my performance. When she asked me more about it and did not understand what it felt like, I told her to go home, get a bottle of shampoo or soap and pour it in your eyes all day long every day. She was amazed that I live like that, but I put up a strong front for her so she would never think that I could not do my job. She is not over me all the time, so I am able to manage with the help of good co workers who would never say anything. If asked about my eyes from my boss, I keep it brief, I tell her they are the same but always trying new things to hopefully be cured soon. Then I move onto another subject. I guess if I ever needed a doctors note, I would go get one. I did use one for jury duty one time. All the doctor wrote is that I was under his care. And it worked for me. Just remember, dry eyes do not define who you are. Fight it every step of the way, I am the best actress in the world sometimes.

[No tears in ATL]

Definitely mention the value you can add, as SAAG pointed out. Emphasize that you like your job.

Sometimes sentences like this can help:

"Sometimes, when I am having a flareup, all I need is a 15 minute break every half hour, and then, I am ok"
"Though it may take me longer due to the pain, I am willing to stay a bit longer to get the job done"
"I think my track record here shows that I am a solid team member, and I will not let this get in the way"

But you have to be specific about the pain, too. Dry eye, much like fibromyalgia, Sjogren's, rheumatoid arthritis, even back pain, is invisible. You may look perfectly normal on the outside. Pose the question: "Boss, have you ever gotten sand in your eye at the beach? That's what it feels like all day to me, if I don't take a short break from the computer every half hour." If they aren't sympathetic to THAT, then I'd start looking elsewhere.

If you live in the U.S., you might consider applying for FMLA if you find you are having frequent doctor's appointments due to flareups, procedures, blood draws. Your physician defines what is a "serious health condition," not the employer. This protects you should you need to take time off work for appointments, but really, it depends on what the doctor will certify.

[No tears in ATL]

Oh, you are in Brazil. Sorry about that.

[André Pereira]

Thanks again, Saag!

I think I'm starting to regain my emotional equilibrium again.
The autologous serum eye drops helped me a lot. (currently, Vitamin D + + autologous serum eye drops Cineraria Maritima Natural + Restrictive diet).

My boss once told me already: Brings a certificate.
There are few people who really understand our problem. Only those who live with us ENOUGH.
Once I was explaining to my boss about my condition, even I was having problems at home too. I told her everything was going to ask for vacation.
At that moment my emotional was in tatters (the same day even), he made a pressure for me to start working in an area that no one else wanted, with small threats.
My conclusion. I exposed my weakness to the guy, and he took advantage of it.
What is my confidence in telling something now? Zero.

DryinDenver
  Many thanks for the information and article. It'll help me a lot because I'm good short time.

You're right. All of you here are an inspiration to me. It's for this forum that I run when things get difficult.

I work for the justice of my country. Not sure how this works in other countries.
My job is to lead and / or comply with court orders in my region.
I spend most of my time driving and the rest doing the documentation.
I have no prospect of growth in career. To climb over, I need to major in law and provide other tender (test, do not know how to speak).
I just can not make mistakes.

Oh that's problem.When speak of the difficulty is to work in the morning, people think I'm lazy. And other stuff. It is quite difficult to explain. But you all are helping me a lot.

Runnergirl, thanks for the reply.

I've tried to pretend that everything is fine. But there are times when it is not and it is impossible to act.
Each case is different. Read all these stories really help to find a solution for my situation.
Unfortunately, I think dry eyes has a little influence on what I am. I am struggling a lot against it. But there are always things that limit me and I think it would be like if I had not the problem. Anyway, thoughts that we all deal sometimes.

NoTearsInATL

I think the way to be done here is very similar to what you described.
My doctor purposed to help me. But even he knows what to write.
The problem my que inflammations do not pass in 15 minutes = /

[Guest]

My boss once told me already: Brings a certificate.
There are few people who really understand our problem. Only those who live with us ENOUGH.
Once I was explaining to my boss about my condition, even I was having problems at home too. I told her everything was going to ask for vacation.
At that moment my emotional was in tatters (the same day even), he made a pressure for me to start working in an area that no one else wanted, with small threats.
My conclusion. I exposed my weakness to the guy, and he took advantage of it.
What is my confidence in telling something now? Zero.

Ok, fair enough then. Knowledge is power, and knowing your boss is like this will help you deal with him more effectively. Times like this I like to think karma is real...

Anyhow, as far as the certificate goes, then I guess I'd think of a few things:

1) Do you have any legal protection due to your disability (ie. eye problems) - the answer to this will help you figure out how far you can push to get what you need, how subtle, or not, you have to be etc.

2) I'm not sure how it works in Brazil, but let's say you do have legal protection, is it something you can afford to fight for? Again, the answer to that will determine how subtle, or not, you have to be in trying to advocate for yourself.

Granted, none of this is FAIR, but we have to deal with the situation as it is realistically, right? Whatever you do, don't despair at the unfairness and difficulty of it all - your life is worth far more than this, and you will get through it, and you will have easier/happier days ahead eventually... you just have to make it there is all, however you can manage.

3) If the certificate will help, then spend some time thinking of exactly what aspects of your job you need help with (ex. eye break for 5 minutes every 1/2 hour, permission to wear moisture chamber glasses even if not cosmetically acceptable, limitations on the lengths of your shift etc. - then explain to your doctor exactly what you need and why (ie. exactly what happens to your eyes when you DON'T get these concessions), and that will hopefully be enough for him to write the certificate for you.

Hang in there though... you WILL get through this, we all have, so you will too!!!

[André Pereira]

Thank Saag.

The certificate will be one of my best protections if something happens due to my problem.

All comments here helped me a LOT.

And I will continue to seek improvements.