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How can eye doctors best help depressed/anxious dry eye patients? Your thoughts.

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  • How can eye doctors best help depressed/anxious dry eye patients? Your thoughts.

    So I started Part 2 of my dry eye bulletin tonight and ended up writing a little stream-of-consciousness lecture to eye doctors on the subject of dry eye and depression.

    It wasn't planned, and I don't write well late at night without my lenses in, but it's a start. And I know this is really long, but it occurred to me after I sent it out to post it here for comment. I would love to hear from people who have experienced depression from dry eye how your doctors could best help.

    -----

    DOCTORS: WHAT DO YOU DO WITH THE DEPRESSED/ANXIOUS DRY EYE PATIENT?

    Do you have a patient with what appears to be mild or moderate clinical signs of MGD or classic dry eye – but who seems to be seriously overreacting? Very depressed? Angry? Unduly frustrated? Abnormally anxious? A patient that is terrified every new treatment won’t work or will have dangerous side effects? One who is compulsive about wanting to try every emerging treatment approach – while failing to give standard treatments enough time to kick in? One for whom you are the fourth or fifth eye doctor they’ve seen so far… and you suspect not the last? One that doesn’t seem to ever feel better even when their clinical findings are improving? One you dread seeing because you know neither of you will walk away from the appointment satisfied?

    To you, their pain complaints may not make sense. Their corneas aren’t sloughing off. They don’t seem to be getting erosions. You’ve got people in much worse shape who aren’t giving you any melodramatic complaints. You don’t see any reason for the kind of pain they’re describing, and even if it were that bad, why are they losing it like this?

    Welcome to the world of dry eye pain and depression. I want to challenge you today to think about how you view these patients. When they pass a certain point where they are, in your judgment, not behaving rationally, it is all too easy to write them off – to determine that their problem is more in their head than in their eyes.

    And maybe it is. But it didn’t start that way. Most of these people were really quite normal before their first experience with corneal pain. But suppose the problem in their head now exceeds the problem in their eyes – does that let you off the hook? As long as you make sure their corneas are safe from true harm, and maybe suggest they see a shrink, is that sufficient?

    No.

    Your dry eye patient is not a pair of disembodied eyeballs. S/he’s a whole person, and you are their doctor – and you are, or if not you should be, better equipped than anyone else in their life to understand how their eye problem has escalated into something involving more than their eyes. When you see the signs of mental disturbance, you cannot, you just cannot wash your hands of it. Sure, you wouldn't ever actually discharge them as a patient, but continuing to treat them while failing to take them seriously may be at least as harmful in the state they are in.

    Why am I saying all this? Because I have talked to hundreds of depressed and dozens of suicidal dry eye patients over the years. There is a wicked combination of factors that conspire to send these people over the edge into severe depression. High on the list is the fact that their eye doctors (yes, most of them have been to several by now) did not seem to take their pain seriously. I’m sure their doctors didn’t intend to be heartless or callous. They just didn’t understand, were probably frustrated and didn’t know how to handle it.

    So how DO you handle it?

    I could probably write a book on this, but for today I will limit it to four practical suggestions:

    1. Listen well to their symptoms, probe, and seriously consider believing them. Or at least fake it well.

    Ophthalmology pays a lot of lip service to the disparity between dry eye signs and symptoms – in medical literature.

    In clinical practice, most patients’ experience is the opposite: when there are no corroborating clinical signs that appear equal in magnitude to reported symptoms, doctors don’t believe the symptoms are that severe. It’s that simple. Yet we know for a fact that there are people, perfectly normal well balanced otherwise healthy people, whose corneas look pretty much OK yet who are suffering corneal pain – burning and other sensations – we don’t really know why – that is anywhere from really irritating to truly debilitating. I have talked to these people every day, all over the country, for years. They’re not all faking it.

    If you don’t appear to take your patient’s dry eye pain seriously, it may have an impact you never imagined. Why? Because you are the only one they most expect and need to do so! Their family and friends can’t understand it. Their psychiatrist can’t understand it. Fair enough, sort of. But, since it’s eyeball related, shouldn’t their eye doctor understand it? Thus reasons the dry eye patient – and walks away confused and frightened, and in many cases eventually hopeless.

    In practice, of course, eye doctors don’t really “get” dry eye pain either… yet. It’s a work in progress. So I invite you to be progressive.

    2. Use OSDI.

    Your patient can download it from my site at this link:
    http://www.dryeyezone.com/encycloped...ments/OSDI.pdf
    (or google “dry eye osdi” and it will come right up). Better yet make copies for them. Encourage them to complete this questionnaire before every appointment, and always put it in their file. It’s quick and easy. It’s not perfect, but it’s adequate and scientifically validated. It gives you both an objective basis to measure how they are doing in terms of symptoms, not signs. It gives you numbers instead of vague descriptions, and it gives them a sense of validation: that how they feel and how their symptoms affect them matters.

    It gives you a starting point for conversation, and a chance at speaking the same language.

    3. Do not avoid broaching mental health topics when necessary, but use great sensitivity when doing so.

    It is common for dry eye patients to suffer from clinical depression for a period. I would guess 80-90% of the people I’ve come in contact with have been on antidepressants or antianxiety meds – many for the first time in their life – during their initial onset of dry eye symptoms.

    But for some it hits harder than others and sends them into a dangerous spiral. I have known many people who reached a point where their head problem (depression/anxiety/etc) had clearly eclipsed their eye problem. When they get to that point, they are truly in a pitiable state because the anxiety interferes with their ability to make rational medical treatment decisions, interferes with their compliance, and interferes with their relationship with you, their doctor. When these patients have lost the ability to advocate for themselves rationally, they need your help and compassion more than ever. Some of them are in or are rapidly headed for despair. A surprising number are suicide risks – and you may never even realize it.

    This is a very difficult area to tackle. Your patient may be in clear need of psychiatric treatment. But how do you suggest this without implying that their problem is all in their head – which is the very last thing they need to hear right now? That’s where steps 1 and 2 come in. When your patient knows that you actually really take their eye pain seriously, they will be much more receptive to your suggestions about their head.

    A practical note: Dry eye patients often fear that antidepressants will make their eyes drier – because some do, for some people. So if their head state is hurting them more than their eye state, and their healthcare team is in agreement that they really need treatment, they may need extra guidance, reassurance and encouragement that only you can give them.

    4. Help and encourage your patient to find and employ practical means of pain management.

    Understandably, for most of you (I know there are many exceptions, of course), this is not your area of expertise. You diagnose. You prescribe drugs. You put in plugs. You do surgeries. You do not plumb the depths of day to day symptom management how-to’s, from the sleep goggles to the moisture chamber sunglasses to the cold compresses to the workplace modifications. You don’t have time and you don’t really perceive it to be your job. Yet just one of these things might make a really big difference to a really distressed patient.

    Perhaps you have someone on staff (I think a lot of you have at least one woman on staff who has dry eye) who can be a point person in your practice for rounding up information on the practical gizmos that make life easier for the dry eye patient. Maybe keep a few samples of your favorite things or an info sheet to let patients know where to get them. Addressing this need is a great way to generate some really grateful patients in general but the reason I bring it up here is that it will help the neediest patients feel that their needs are being taken seriously – which will help them in their emotional recovery.

    These “special needs” dry eye patients need everything you can do to help them limp from one day to the next till they come out the other side of the Dry Eye Depression cycle. Be part of their team.
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

  • #2
    This is a great thread and I hope it is read & well received by the medical community.

    What has helped me the most is my doctor saying confidently, "This should work for you, based on your signs and symptoms. If this doesn't work, never fear, we'll try something else." Another biggie for me was hearing that "there are tons of things in the pipeline for people in your situation."

    Not, "I don't think your problem is that bad" or "you need to face this as a chronic condition." Gee, thanks for reminding me that this is a lifelong battle, dingbat! As if I already didn't feel like a freak of nature to begin with!

    And I really hate to even say this because clinical signs are probably what doctors care about the most, but regarding #2 - the OSDI questionnaire - that is VERY IMPORTANT. I could almost give a crap at this point what my eyes look like under a high powered microscope after chemicals have been dumped in them. Especially now that I know that Schirmers and TBUTs and the like vary from day-to-day and aren't especially useful tools. SYMPTOMS, dude, help me with my SYMPTOMS!! If I feel good then you will see less of me and we'll all be in a happier place.

    The best doctor I have seen so far simply says that we'll find a plan that works and for me to "keep up my good work" through diet, exercise, and environmental control. He is encouraging and always giving me hope that there is SOMETHING that is going to work for me.

    We must hear from our doctors that there are no dead ends with this disease.

    Comment


    • #3
      Excellent. I love your commitment Rebecca..

      it easy for us to understand your words, but will the same happen with doctors?, hope so, if only one changes his behaviour, this thread is a success.

      Comment


      • #4
        Beautifully said.

        The emotional/psychological aspects are so important for doctors to understand, but even better is that you gave concrete suggestions for how to handle it. I also think the part about having someone who knows about some of the (potentially) helpful products out there is very important.

        If I had not found this website, I honestly do not know how (or whether) I could have made it through. My eye doctors only knew to offer plugs, Restasis, doxycyline, steroid drops, and to tell me to do warm compresses with a washcloth.

        For this website, I learned about making a rice baggy for the compresses, which made a huge difference for me (the washcloth irritated my skin and was ineffective). I learned about Azasite, which I had to beg my doctor to prescribe, and which was the first product that made a noticeable difference. I also learned about using Restasis more than twice a day, and that has helped while using it 2/day did not (I use it 3/day). And I learned about which artificial tears might work for me and how best to use them.

        I also learned about Tranquileyes and humidifiers, which did not help me but were certainly worth trying. (I still think the humidifier would help me if I got a different kind.)

        I also learned about IPL for dry eyes (which I was unable even to convince my eye doctor to write a referral for so my insurance might cover it). I'm still undergoing IPL but it has improved my symptoms.

        In sum, ALL of the treatments that have helped me have been ones I learned about SOLELY from this website and from the people who generously post about their experiences and knowledge. My eye doctors did not know about ANY of them.

        The thought of what my situation would have been were it not for this website is unbearable to contemplate. And that is unacceptable -- eye doctors should know about these things.

        Want to add: Sadly, my eye doctors are at a well-known and highly competitive School of Optometry (I am a student at the same university, so that's what my insurance covers). Every time I go, I am seen by student (maybe they're residents?) and also a supervising doctor. I try to educate the students about the condition and treatments, but they don't listen to me -- and why would they, given that their supervisor doesn't? But it makes me sad that they are sending out into the world ever more eye doctors who will not know anything about this problem. An ophthalmologist who is associated with the school but does not teach or supervise there was more open to the ideas I came in with, but she's not in contact with students -- and she didn't know about the treatments before I mentioned them.
        Last edited by painless; 23-Jul-2010, 12:47. Reason: eye doctor info

        Comment


        • #5
          Originally posted by Chemia
          I got that one a lot

          "I don't think your problem is that bad" or "you need to face this as a chronic condition." Gee, thanks for reminding me that this is a lifelong battle, dingbat! As if I already didn't feel like a freak of nature to begin with!

          Or you will get progressively worse with time since you are female. I decided never to see that doctor again.


          Oh here is another one: remember don't cry as it will dry your eyes out and get on some antidepressants. In the meantime, lets try some hormones over your eyes.

          I have yet to come across a considerate doctor, one who listens and offers hope.
          YES the first two bold i have had!

          The third bold. Well i had: Oh look your crying your eyes arent that dry!

          But there are doctors i.e dr T who are reversing this problem for many, and many do get better (i know i havent and am unlikely too) but still telling people theres no hope when they first have dry eye is ridiculous, to them dry eye is hopeless- because it takes alot of different things they dont know about.
          I healed my dry eye with nutrition and detoxification. I'm now a Nutritional Therapist at: www.nourishbalanceheal.com Join my dry eye facebook group: https://www.facebook.com/groups/420821978111328/

          Comment


          • #6
            Hi, Rebecca.

            As a person who has a rare and hard-to-diagnose problem that is not solved overnight, I think it would have helped me earlier on in the process if a doctor would have told me that it is a long and uneven process to recovery. Although I knew that being compliant was best and was so, I would have been less discouraged if I had known that I would have setbacks along the way and that I would see improvement over time.

            Thanks for talking with the docs!

            --Liz

            Comment


            • #7
              over the last year Ive been treated by every doc as a 'chronic' dry eye sufferer.

              i think its important for docs to remember that we as sufferers were not this way forever, just like they arent suffereres now, and we deserve treatment and innovations to get us back to normal, just as they would expect for themselves

              just over 12 months ago i was wearing my contact lenses comfortably 16 hours a day, using them safely, and never used one eye drop beforehand in my life...when i got my new lens' prescription back then, my eye doc said i had such incredibly healthy eyes. some stupid inflammation shouldnt make you a victim who can be chastised

              Comment


              • #8
                dry eye depression

                Thanks Rebecca for your inspiration and and dedication to this problem, I was wondering if I was crazy. This problem tries to overtake and control my life and all the eye doctor did was give me a couple of discount coupons and tell me to put in drops around 4 times a day and I should be alright. Pay at the front desk.

                Comment


                • #9
                  This is such a great thread and I can relate to so much of it having been there myself.

                  Many specialists underneath are just as frustrated as their patients I would think, though this is not communicated very well. And their sympathy for individuals situations is not always as good as it could be! Totally agree! Bed side manner leaves a lot to be desired this is true.

                  Ultimately, I think we need to take back accountability for our own health and well being, which is what a lot of people out there are now doing! If the docs don't have the answers, you need to keep searching until you find the answers.

                  To borrow a line from a really great documentary called Foodmatters, everyone has a right to self-help and self care and I firmly believe this is true. If you can't find this help within the traditional medical establishment, seek alternatives.

                  Never give up! I didn't and I found my solution

                  ps...and like others have commented, I cannot thank these forums enough for giving me hope and understanding over something that is widely misunderstood and played down by others.

                  Best
                  Jamie

                  Comment


                  • #10
                    I'm glad you wrote this!

                    It makes me sick to my stomach that doctors dont stress the aftermath of Lasik surgery. The pain that many people will go through mentally. I get up sick almost daily and stress myself to the point of having a panic attack. It's reflecting on my family and friends. I hope and pray that there will be a solution to the problem. I hope that the doctors take this more serious and not just think about the money going into their pockets. I wish each person the best and hope that things get better for me. Thanks!

                    Comment


                    • #11
                      Well written Rebecca! Actually listening to your symptoms and taking them seriously is huge. Most doctors I've seen have not done that. I had one doctor who unfortunately left my area, but she would do the exam and tell me exactly what she was seeing, which was great since I appreciated getting the details since I had learned so much about dry eye. If my corneas looked good, she would then ask me how I was FEELING so that we could treat based on that. She knew I had spent a considerable amount of time researching dry eye (thanks to this site :-)) and would listen to my suggestions for treatments and help me weigh the pros and cons. I've had trouble finding someone to replace her.

                      Comment


                      • #12
                        Thanks

                        This is a tough thing to discuss to anyone-even family or spouses. Most people are like get over it and move on. This caused me much depression and anxiety that I still battle. I hate the redness the most. I always wonder if people think I'm on something. I hurts-Thanks again for all you do..
                        Norm

                        Perhaps you have someone on staff (I think a lot of you have at least one woman on staff who has dry eye) who can be a point person in your practice for rounding up information on the practical gizmos that make life easier for the dry eye patient. Maybe keep a few samples of your favorite things or an info sheet to let patients know where to get them. Addressing this need is a great way to generate some really grateful patients in general but the reason I bring it up here is that it will help the neediest patients feel that their needs are being taken seriously – which will help them in their emotional recovery.

                        These “special needs” dry eye patients need everything you can do to help them limp from one day to the next till they come out the other side of the Dry Eye Depression cycle. Be part of their team.

                        Comment


                        • #13
                          Depression and DES

                          This is a really helpful thread to me. I do have other contributing factors to my depression, but DES added to the heap is about more than I can bear at times. I think it would be helpful for eye doctors to be trained to look at us as a whole person, not just as an eye disease or disorder. If they are sensitive to what we are going through, I think that alone would lead to less depression. We'd have another supportive person. So I know I'm not adding anything new here - kudos for this website!

                          Comment


                          • #14
                            Eye docs & anxiety, depression

                            I love my eye doc. I already have signs that I will one day get macular degeneration; I'm new to this terrible dry eye (due to clogged oil glands because of blepharitis). When I mentioned that I hadn't realized my red eye was due to bleph because I'd been letting suds from Nizoral shampoo sit on lids, he realized how serious my condition was (he hadn't caught it at first, even though I said I felt like I had a foreign object in one eye.) He literally hung his head down--so some docs are very compassionate. I see him again in a week and have a long list of questions to ask him. Am also going to call to make sure I get a long appt, not just the recheck I'm scheduled for. I'm sure if I'm persistent with him that he will do all he can for me. If there are products on this site that I think might help, I'm going to print out the info and ask him. You have to advocate for yourself, but YOU HAVE TO GET THE RIGHT DOCTOR ALSO. Keep looking for a new doctor until you get one that works with you. Many "top" docs aren't into dry eye conditions--they're just into surgeries. Becky

                            Comment


                            • #15
                              On 4th ophthalmologist . Not one wanted to address the emotional damage this has caused me. Even alluded to suicidal thoughts to one who REALLY didn't want to hear that. My PCP has been the one who listened. But not one eye doc

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