Is this you?

[Rebecca Petris]

Is this you?

• It's been less than 12 months since you were diagnosed with dry eye, or had a sudden onset, or started regressing.
• You are struggling with fear and loss of hope. You've tried "everything" and "nothing" seems to work.
• When you read this forum, you seem to keep seeing stories of people who have had dry eyes for years. Everything you read contributes to the impression that a dry eye diagnosis is almost certainly a life sentence.
• The more you read, the more fearful you become that you may be stuck with this forever. You begin to think of all the normal things that you can't do right now. You think of what it will be like to never, ever be able to do them again.
• The thought of living the way you are right now - forever - is almost unbearable, and you are nearly convinced that that is what is going to happen to you.
• You keep reading, day after day, hour after hour. To all intents and purposes you are addicted to the forums. You tell yourself it's because you want more information and ideas for treatment, but deep down, you are striving for a glimpse of hope. Paradoxically, the more you read, the more fearful or hopeless you feel.

If this is you, it's probably time to get off the board. Not that you aren't welcome. This board is open to all and is here to help people share information and support. But in a certain state of mind, reading the boards frequently can be downright harmful. You start misinterpreting the deluge of painful stories as characteristic - and predictive of your future. This in turn makes it far more difficult to benefit from any information sharing. You can't make rational decisions about your care when you're under that kind of emotional stress, and your emotional state and your dry eyes start spinning out of control.

Here are some ideas for people who need to get off the boards. I hope others will chime in.

• Find a dry eye buddy or two. Start emailing with them. If it feels appropriate, ask if you could call them.
• Call or email me and ask me to block you from the board till further notice. Please, never imagine I would be offended.
• Level with a family member or friend about how much you're struggling emotionally. If you don't think they'd understand, print out one of our pages on depression and dry eye.
• If you're having suicidal thoughts, and you cannot bring yourself to level with anybody within reach, do whatever it takes. Call a 24/7 suicide hotline. Email another member and tell them what's going on. Reach out to someone, somewhere.
• Other ideas...?

If you're reading this and you can't relate to it at all, ignore it... or give a thought to whether there's anyone you know that this may be happening to. You might be the only one who knows. You might be able to help.

I am not being melodramatic when I say that there are lives at stake here. Trust me - I've seen some very high risk situations over the years. It's not that I feel personally responsible for how everyone will interpret or respond to what they read on this board, but... oh well the heck with it, I DO feel responsible. Even if I know more people are helped than hurt, I don't want anybody hurt.

I'm very proud of what a caring community we have here. Every now and then something happens that prompts me to post reminders like this about depression, the risks associated with it and how we can help each other.

[Natalie06]

My two cents

Rebecca is absolutely right. There comes a time when the need to try and help yourself can tip over into obsessive/compulsive behavior that starts imposing limits on living your life as much as the disease you are struggling with. I've been through it twice, first with endometriosis and now severe dry eye. And being a compulsive/obsessive kind of "I need to fix this" kind of gal, I can totally relate.

God knows there were days that without this board I don't know if I would have made it mentally. To have a forum where people "truly" understand what we are all living with is invaluable. God bless you Rebecaa!!! But when you find yourself coming here first or coming home from work and turning on the computer before taking care of your house, animals, kids or whatever, it may be time for you to self impose some limits and find ways to live that do not include a daily reminder of severe dry eye and do include ways to enjoy what you can enjoy. But I have also started being honest with others about how deeply this has affected me, especially my family. So they understand that driving long distances is a problem for me or know that when they invite me somewhere, I may have time/physical limits. And now that all my neices and nephews have their drivers' licenses, I joke that they will be chauferring "Aunt Natalie" for the rest of their lives. It's actually really nice to have them drive me around. And there is a huge relief in not trying to hide this from them anymore. I denied that I was in pain from endo for many years and I can't do it again for severe dry eye.

One of the things that has helped my anger issues about the Lasik surgery that "threw me under the bus" is keeping a journal and/or writing letters, most of which never get sent. When I find my anger or despair spiraling out of control, I sit down and just dump it into a letter to whomever and about whatever has tipped me over the edge that day. Once it's out of my head and on paper, then I find it easier to move on.

I have also become a movie fan and joined Netflix. Since reading is too tiring for me, I am getting movies once a week and find that I enjoy being able to discuss them at work or with friends.

Another thing that helps me is humor. My new joke is that I am now done with anymore illnesses/problems that begin with the letter E: "E"ndometriosis, tennis "E"lbow and "E"ye problems. Time to move on to a different letter of the alphabet!!


And I just hired someone to come and rake the D%^&m leaves for me. What a luxury!

And I can't wait to hear the jokes once I get my Wiley X wraparound sunglasses....

God bless you all.

Natalie

[DrG]

I am not being melodramatic when I say that there are lives at stake here. Trust me - I've seen some very high risk situations over the years. It's not that I feel personally responsible for how everyone will interpret or respond to what they read on this board, but... oh well the heck with it, I DO feel responsible. Even if I know more people are helped than hurt, I don't want anybody hurt.

I'm very proud of what a caring community we have here. Every now and then something happens that prompts me to post reminders like this about depression, the risks associated with it and how we can help each other.

I'm going to break rules, here, because I've been in this situation as well, and it does help to talk about it.

Over the years, I've been in contact with a number of patients who cannot forget about their eyes for more than a few minutes. They are just barely hanging on. Where can they go for hope? Nobody understands them. Not their friends, not their family, not even their psychiatrist. They naturally turn to the internet, and what do they find? Well, let's hope they find more websites like this one.

I have been telling my patients for some time now that once they commit to looking for solutions, they are leaving that place of hopelessness and not looking back. We are going to put one foot in front of the other and take steps forward, and not to go near the internet. I know when they take a peek and I know which sites they have visited because of what they say.

I know exactly what you are saying about feeling responsible in these situations. You wonder what it is you failed to do and could you have done more. Well, the answer is NO, and there are always other factors beyond our control. You've done all you could, and nobody has worked harder to keep their website hopeful and upbeat than you, Rebecca.

[Lucy]

There is also a "behind the scenes" part of DEZ that is rarely talked about. I can only speak for myself, but I've had people PM or email me and mostly they want "one person" to talk to at that point. Some reassurance and hope. A little after they have gotten their feet wet, they'll join in the forum.

If I feel someone could use a message from me, I'll send a short (you know me) message. This is mostly if I feel I have a connection, or something in common with a certain individual. If I don't feel a connection, I'll just pass hoping someone else will take it up. I don't make the initial connection often now, but some people feel generally easy about sending me a message.

I think this has a healing and brings the person into the light and part of the DEZ community if they are so inclined. Sometimes people are ok after getting their words down on "paper" and they are better able to sort their feelings out. Rebecca is probably inundated with such PM's.
Lucy

[shells]

Hi Rebecca,

Being one of those people who spent my first year with dry eye obsessing over the internet and this website, I can totally relate to what you are saying. I knew it wasn't healthy, but really didn't know where else to turn. I tried keeping a journal, tried taking walks at night to clear my head, tried talking to a professional, etc., but I think what helped me most was reaching out privately to members (like Lucy ) in PMs, phone calls, and emails. So, I think your suggestion of limiting the internet searching and just having a few dry eye buddies is wonderful.

I don't visit the site as much as I used to, and don't post that often, but I still keep in touch with some of my "dry eye buddies" through email. I would not have gotten through my roughest times without them. Since I've been dealing better emotionally, I've been contacted privately by a few people just starting with dry eye, and I know they have appreciated talking to someone who understands. It is so hard to find people who understand what you are going through, and that is one of the reasons this site is such a great resource. If you are in that low place that Rebecca talked about, please reach out to someone for help. So many of us have been there and gotten through it with the great people on this board. Thanks, Rebecca!!

-Shells

[LouSam]

Connecting with dry eye people

I definitely fit the criteria that Rebecca mentioned for getting off the site, but I've been reading the posts for the entire 10 months since being diagnosed with dry eye (although I haven't posted anything before because my account was messed up). I try talking to people about it, but I've never met anyone who had a clue what I was talking about. Nothing helps a whole lot, but at least many things help a little! Is there someone on this site who would be open to talking me either via email or on the phone at some point? I think that a connection with someone who has been through this would be extremely helpful. I promise to repay the favor for new dry eye sufferers someday once I have acquired more wisdom!
Thanks!!

[dianat]

See your private messages, gettin better.

[stella]

Rebecca's post has led me to analyse why i am on this site !
1 To seek for hope and information - both which i have recieved in abundance - especially information
2 Because i like the site and feel i have friends on it
3 But also because i genuinely want to help others - if i can
4 I look on it as a "cyber self-help group" and consider it has a definate place in my management and comming to terms with this syndrome
Am I addicted to it or obssesional ? Maybe a little but i enjoy being on this site
Do i look for a cure? - not necessarily .I do look for tips on how to manage my life successfully and overcome it
To be realistic - There are many many ailments out there that have to be managed rather than cured and DES is only one of them
There are also amazing people out there who have overcome and i want to join their ranks (many on this site are an inspiration to me )
Rebecca - Have you ever thought of publishing a mission statement for this site ?
It might clarify what your purpose is and avoid some of the negative pitfalls and unrealistic expectations
Just an idea
Cheers and have a good week despite dry eye
Stella