How to get better care from your dry eye doctor

[magoo]

(Or, “Everything I’ve learned over the years from Dr. Brown and DEZ members about eye doctors and their patients”.)

1. Is this article for me?

Yes.

I started writing this article with certain types of patients in mind... perhaps most of all the chronically dissatisfied doctor shoppers. But there are ideas here which may help almost all dry eye patients (including those who are not unhappy with their doctor) to get more out of the relationship with their doctor. And even give a little more too.

Those of you who are inclined to breeze through this article just to kill time till Part 3 (“How to Find a Better Eye Doctor”) might be the very people who most need to read this one. Hopefully, it will cause some of you to re-assess whether you need a new doctor right now. At the very least, it may give you some clues to help you have a better experience with your next one.

2. Is my current eye doctor worth investing in?

That, by the way, is what this article is all about: investing in your relationship with your doctor, in hopes they can help you more if you understand them better, communicate with them more effectively, and partner with them more intentionally.

In my opinion, the minimum qualifications for an eye doctor to potentially be useful to Someone Like You are:
a) A pulse.
b) Intelligence.
c) Willingness to go to bat for you.

I won’t deny that plenty of specialist knowledge is really helpful too. But if you expect a doctor to have every possible exotic dry eye diagnostic tool and treatment approach at his fingertips, you’re crazy. Of course, if you can afford the time and money to be one of those dry eye connoisseurs who fly around taste-testing diagnostics and treatments from every self-styled expert in the country, fine. Knock yourself out. And enjoy educating the rest of us. Will you get better faster? I don’t know. Ain’t seen it happen much. Meantime, for the rest of us, I’m going to insistently hold the unpopular view that your dry eye doctor might be better than you think.

So here is my Word of Wisdom #1: If you resent having to educate your doctor, get over it. I really mean that. Fact is, you won the “Complicated diseases with far too little real science and far too few really well trained experts” lottery. And that’s really too bad. I really wish you hadn’t. But you did. So get over it.

...Because it IS going to be up to you to figure this out (with the help of one or more living, breathing, intelligent, willing doctors) and if you already feel like you know more about dry eye treatments than your doctor, it may always be like that wherever you go. Some of you will always be a step ahead, especially those who are compulsive DryEyeTalk readers. Just because your doctor doesn’t do lissamine green staining at every visit and is not a source of exhaustive, objective information about the BOSP, IPL, or the ****** probe doesn’t mean he’s a dunce. It means you’ve had far more time and, critically, more motivation to pour into your dry eye research than they have so far. And that’s okay.

3. How am I different from my doctor?

First of all, you have different GOALS.

Your goal is to feel better. Maybe it’s tied to specific activities - you need to be able to work better, read more, use the computer, go out, etc. Maybe not: maybe you just want to stop hurting, period. Maybe looking better is part of it. Maybe seeing better. But by and large, the dry eye patient’s main concern is to be out of the pain & discomfort that are running (or, as you may feel right now) ruining his/her life.

Your doctor’s main goal, on the other hand, is to identify and treat diseases that interfere with the maintenance of a reasonably healthy ocular surface and threaten vision.

These goals are generally compatible but by no means synonymous. Any incongruity between the two, however predictable, causes endless tension and dissatisfaction in the dry eye doctor-patient relationship because there is no nice neat one-to-one relationship between the visible state of your ocular surfaces (“signs” in medical vernacular) and how your eyes feel (“symptoms” to your doctor, “pain and misery” to you).

Which brings us to a second way you and your doctor differ:

You have different MEASURING STICKS.

You tally progress in terms of symptoms (how you feel).

Your doctor tallies progress in terms of signs (what s/he can see under the slitlamp and in whatever tests they run if any).

Again, no nice neat one to one relationship. Best case, noticeable and probably unpredictable gap between signs and symptoms. Worst case, signs are ALL perfect and symptoms persist. You are all somewhere on that painful spectrum.

Hence the classically frustrating appointment where you’re trying to describe how much this hurts and how much it’s impacting your life and your doctor is saying “Gee, you really don’t look that bad” and you want to slap him/her - or, on yet another end of the spectrum (those with the most severely drying diseases whose cause of pain is pretty obvious), the doctor can smugly agrees the signs are bad but because they have so little understanding of your pain they offer no comfort.

So here’s yet another you-won-the-lottery-now-get-over-it harsh fact of life: With a little effort, you are much more likely to understand your doctor’s measuring stick than he is to understand yours. You can understand numbers and tests if you try, but eye doctors just honestly don’t GET the dry eye pain factor.

4. What do I expect from my doctor?

Here are three things that you SHOULD expect from your doctor:

a) An objective scientific partner.
You need to capitalize on your doctor’s best skills. You’re not objective. You’re hurting too much to be objective. An objective scientist can be really helpful to you so that you don’t take too erratic or compulsive an approach to treatment and don't quit treatments that are actually helping your tear film just because you don't feel better (yet). On the other hand, a doctor who has drunk too much koolaid from one pharmaceutical or another is a red flag. Objectivity is a must.

b) An engaged, willing partner.
Your doctor needs to be a good listener who understands your motivation and is willing to help you unravel the dry eye mystery. If you have taken pains to be a good, compliant patient and to communicate well, but you feel like your doctor isn’t interested, can’t wait for you to leave, and is not motivated to explore any new solutions, it’s time to move on.

c) An intelligent partner.
If your doctor is spewing dry eye textbook lines or pharmaceutical mantras without showing any signs of engaging his/her intellect and independent thought processes on your behalf, it’s time to move on.

Now, here are three things you SHOULD NOT expect from your doctor. I’m not saying you can never find this (there are lots of doctors who can meet one or more of these) - but to walk in the door with these unspoken expectations is to set yourself up for disappointment.

a) Understanding.

You want them to “get” how you FEEL and how it’s affecting you.

I hate to generalize when I know so many fine exceptions, but eye doctors as a class are not the doctors with the best bedside manners. Statistically, they’re probably considerably more likely to be numbers geeks than founts of compassion. If you’re getting real empathy from your eye doctor, great - I'm glad you got one of the gems. Most eye doctors, as I mentioned, really don’t “get” dry eye pain. They really don’t. It’s a foreign language to them. They will probably appear to understand severe corneal pain if and only if it’s accompanied by visible severe injury to the cornea.

b) A dry eye know-it-all.

You want them be aware of every medical tool available for diagnosing and treating dry eye. Right?

There may be a handful in this country who know about every possible treatment, have exhaustive information on every treatment, and can provide objective advice on the suitability of every one of them without research. But your local doctor is unlikely to have all this at his fingertips, and shouldn’t be expected to.

c) Comprehensive treatment advice.

You want them to diagnosis and treat you - where “treat” is defined as telling you anything and everything you can do to FEEL better.

Now, if the doctor doesn’t “get” the pain factor, and if, as I mentioned earlier, their goal for you is a healthy tear system and ocular surfaces, it should come as no surprise that their definition of treatment is going to bear more relation to their goal than to yours.

The doctor’s arsenal is predominantly, if not exclusively, drugs (and a few devices such as plugs - and, rarely in dry eye, surgery).

Practical strategies and consumer products - such as all those types of things I discussed in Part 1 (How to Feel Better...) plus all the night goggles, etc. are never their core area of expertise. So don’t expect your doctor to come up with the best pain management solution before you do.

When I talk to people who have dry eye and give them advice on non-medical dry eye aids, one of the things I hear most frequently is “Why didn’t my doctor tell me...?”. And when I say, “Because they don’t know...” it’s really not a criticism of the doctor. Most doctors don’t consider advice on dry eye “gear” and lifestyle modifications to be part of their job any more than they consider counseling part of their job. So you would do well to stop expecting it and get this need met elsewhere through your own research. And when you find success with something, don’t forget to tell your doctor what you’re doing and what (if anything) is helping. Considering what you’ve been through, the least you can do is help educate your doctor so that the next person to come through gets the benefit.

Some of you have a severe visible form of dry eye disease - such as Sjogrens, Stevens Johnson, graft-vs-host-disease or an exceptionally bad case of LASIK dry eye. In your cases, the doctors at least have something they can sink their teeth into. What they will expect to do is assess and monitor your condition, and prescribe whatever they think will be most effective at this time - but they still will be behind the times as regards practical tips to help get you through the day. And the rest of you, whose discomfort is disproportionate to your visible disease, are destined for a harder time with eye doctors in some ways. Absent any extremity of corneal disease, they will simply treat whatever disease they CAN see signs of, however mild, on the theory that what they are seeing MIGHT be your source of discomfort - be it blepharitis/meibomian gland dysfunction, allergy, lagophthalmos, or conjunctivochalasis. Treating these things may or may not yield results in terms of pain improvement.

Bottom line... You need to be intentional about your expectations of your doctor. Know what you expect. Make sure it’s reasonable, and tell your doctor what you expect, or better yet ask them what you should expect, so that if s/he can’t meet your expectations, you can both save yourselves some headaches and heartaches. Talk these things over with your doctor candidly. And let it be okay to lower your expectations.

It is a sad fact that for many years, eye doctors received astonishingly little training in dry eye. This is changing, thanks largely to the pressures of demographics. There are more dry eye savvy doctors out there than there ever were before, but not enough, and probably more optometrists than MDs because in the last two decades the collective ophthalmic cornea brainpower has been diverted to lucrative refractive surgeries, not corneal disease treatment. All that said simply to underscore your need to be your own best advocate.

Expect to be an active part of your care - to research your condition, to ask the doctor lots of questions, and, yes, to be the one to suggest additional treatments and even tests. Many patients are truly uncomfortable in the driver’s seat. If you’re one of those, and can’t get past it, you either need an advocate (family member or friend) or you’ll need some help from others finding Dr. Perfect.

5. What does my doctor expect of me?

So we’ve explored several of the ways in which your doctor may seem to fall short and how you can temper your expectations.

Now, what about the doctor: What do you think s/he expects of you?

There are, alas, some few doctors out there who simply expect you to (a) get better and/or (b) stop whining and/or (c) go away. To these, dry eye patients are simply a nuisance: You take up a lot of chair time. You don’t produce significant revenue. And as if that weren’t enough, you have the gall to be chronically unhappy! This makes for a thoroughly dissatisfactory patient in every respect. - If you have one of those eyecare duds, you do NOT need to ‘get over it’. You need to either dump them pronto or, if you have a peculiarly economical and humorous mindset, you can amuse yourself by flattering them into their best possible behavior so that in spite of themselves they suddenly find you’re their favorite patient.

But let’s assume you already have a competent doctor with a reasonable attitude.

I don’t know what they EXPECT of you, but I think I know what they HOPE of you:

a) Accurate reporting of your symptoms.

This sounds simpler than it is. It is difficult to be objective when you’re in pain, and it takes discipline to report all symptoms without blending in a lot of conclusions and self-diagnosis.

Furthermore, when you have a history of doctors not taking your pain seriously, there can sometimes be a tendency to make the description a little more intense each time in hopes you can get the point across better. This is anxiety at work and it’s understandable but unfortunately it backfires, serving only to widen the sign vs. symptom chasm and mystify your doctor.

A little further on I’ll give some practical tips for conveying your symptoms more effectively.

b) Compliance.

Are you a compliant patient?

Do you do what you’re told?

If not, and you go back for a follow-up not having done it, how do you think your doctor will feel and how willing will they be to explore a different treatment plan?

Maybe you think your doctor’s treatment plan is stupid. Maybe you don’t want to do it because your previous doctor(s) prescribed it too and it “doesn’t work” (i.e. didn’t make you feel better). Fine. But you’re going to continue to be frustrated for however long you maintain that attitude. You need to at least talk to the doctor about it.

Your doctor needs the opportunity to observe the effect of X course of action consistently applied - otherwise s/he is working in the dark. If you’re unwilling to follow any professional advice, why are you there? But if you’re going to make some progress, remember, always remember that his goal is the health of the tear system - not feeling better! Frequently, feeling better lags getting better: improving the tear film can be a slow tedious process and the benefits may not show up in your “eyeball sensations” early on. But whatever treatment you’re following, you still can employ all those means I already told you about in Part 1 to FEEL better.

But, you ask, what do I do when my new doctor prescribes the same thing three out of the last four doctors did, which didn’t work?

First of all, did you actually follow the treatment given by any of those previous doctors, exactly as directed, for the full period until a follow up exam? If yes, and it didn’t work, in what sense did it not work: yours or your doctor’s or both? Did the doctor see no improvement AND you felt no improvement? If so, by all means explain this to your doctor and negotiate a different treatment plan so you don’t waste your time and money. But if you never actually gave it a decent chance before, why not give it a chance this time, for an agreed period? Consistency, attention to details and patience in treatment can sometimes make all the difference.

But, you ask, what do I do if I totally can’t stand the thing he prescribed?

It happens. Restasis burns. So may Azasite. Doxy may upset the tummy. You may feel drier after a compress. Plugs might drive you nuts. Maybe all drops seem to irritate your eyes.

What to do? Don't walk out with a plan you don't intend to follow (unless you don't plan to ever come back). Either negotiate it before you leave, or go away intending to do it. Once you get started, don’t just quit without telling your doctor. If you quit, fine - but call the office and tell them why. This is for the benefit of the relationship - so that you don’t show up three months later at a follow-up appointment and, when asked, confess that you quit one week after starting - and risk getting written off as a non-compliant patient. Communicate. Tell them when it happens. And make sure you ask them to put it in your chart so the doctor doesn’t get any surprises when you show up next time.

By the way... about those prescription drops that burn. Try buffering them by applying a little Unisol 4 (unpreserved saline sold in a box of 3 bottles on the bottom shelf of the contact lens section of most pharmacies) or a thin, bland artificial tear 5-10 minutes before putting in the drug that you hate. On the other hand if you’re among those whose eyes seem bothered by virtually everything they put in, talk to your doctor about autologous serum drops.

6. How do I bridge the communication gap?

If you insist on expecting the doctor to speak your language, you are probably going to be chronically frustrated unless your doctor has exceptional people skills. Put some effort into speaking his language.

a) Quantify and describe your symptoms effectively.

Download OSDI:
http://www.dryeyezone.com/encycloped...ments/OSDI.pdf

This is a really simple dry eye symptom scoresheet. Print several copies. Never go to an eye doctor without completing it and presenting them with a copy. It’s quick and easy to complete. It takes subjective symptoms and converts them to objective numbers. It speaks the doctor’s language. S/he will (or at least should!) appreciate your attempt to convey symptoms in a scientifically validated format. It's used in clinical trials of many dry eye drug candidates.

Red flag: If your doctor refuses to pay attention to OSDI, that is not okay - unless s/he has an equal or better tool for evaluating and documenting your symptoms.

Work on finding nomenclature for your symptoms, too. Don’t just say that it hurts or that you can’t read. Use specific terms for sensations - burning, foreign body sensation, photophobia, etc. Make sure you learn to differentiate between corneal symptoms and eyelid symptoms.

b) Fax it first.

The day before your appointment, put together a 1-page fax which briefly summarizes (bullet points are best) your symptoms, your goal(s) for this appointment, and your questions. Send it in the day before your appointment. Your doctor will really appreciate this.

c) Resist the temptation to self-diagnose.

Describe what you’re experiencing - not what you’ve decided it is based on what you read on the internet. Let the doctor form their own conclusions first, then start asking all your what-if and could-it-be questions.

d) Voice major concerns during the appointment.

Often, this does not happen because your stress level is high. Bring a family member or friend along for support. Bring a list. Whatever you have to do. Don’t set yourself up to walk out of the room thinking of all the things you should have said.

e) Tell your doctor about any non Rx things you are using that are helping.

Better yet, bring everything with you to show them, describe how you’re using it and whether/how it is helping you. This is both for your benefit (for the relationship - so that they know everything you’re doing for your eyes) and for the benefit of future patients of this doctor. Even if the doctor does not seem the least bit interested in the goggle or heat pack or moisture chamber product you just showed them, you never know: Tomorrow they may see a patient for the first time who is just like you - and they will suddenly think, “I wonder if that thing so-and-so was using would help this person”.

f) Leave with a treatment plan that you fully intend to follow... and then follow it.

If your doctor can’t come up with a treatment plan you can agree to, you’re both wasting your time. Either be willing to try what they suggest (and tell them you’ll let them know if you stop midway) or communicate up front that you can’t/won’t do it and take things from there.

So, everyone, I wish you the best with evaluating where you are at with your doctor and making those difficult decisions about whether to move on or stay where you are and start investing to build the relationship and get better care. I wish I could wave a wand over the ophthalmic and optometric professions and make them all equally compassionate experts in the conditions we care about most, but in the meantime, we can all do something to better our situations - and by doing so, we may be helping our doctors to learn to do more for their other dry eye patients.

[magoo]

Thank you, Rebecca! I am going to be seeing a new ophthalmologist in my HMO soon and am going to read and reread this until it is firmly seated in my brain.

I love the bits of humor. Humor always makes things easier to absorb, at least for me.