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?
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:
(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.
The Dry Eye Zone