Monday, July 17, 2017

Does it ever get better?

My answer to this question is always a resounding yes... as long as you are willing to put some careful thought into what "better" actually means.

Getting better is not a binary concept.

There's often a tendency to think about dry eye in what I would call binary terms. Black and white. Two choices. Curable/incurable. Permanent/temporary. Chronic/treatable.

This kind of thinking is, I believe, fundamentally harmful to patients who are struggling. When you're in pain or have other persistent, perhaps disabling symptoms affecting daily activities and quality of life, you have to be able to think in terms of incremental improvements rather than wholesale leaps that can't be visualized or readily achieved. Otherwise, you forfeit hope.

Here's an example of a classic communication dynamic that always causes me particular concern:

Doctor calls it "chronic".

Patient hears "incurable".

Doctor is talking about (for example) an inflammatory condition of the patient's meibomian glands that s/he expects to need daily attention on a long term basis.

Patient is thinking about waking up every few hours to put in more ointment, getting up in the morning with sore eyes and perhaps lids stuck shut, going through the day in constant discomfort, and seeing activities get more and more curtailed.

Patient looks at that composite. Hears "chronic". Begins extrapolating that composite of today's reality out into the future. Then, perhaps, hears an even worse word: "Progressive". Begins picturing every succeeding decade of life getting worse. And thinks: "I can't do this."

Then the emotional snowball effect.

Patient becomes stressed, anxious, depressed. Ironically, doctor may advise them not to use anti depressants because their eyes may get drier.
Patient feels trapped with too few choices.
Patient becomes less compliant. More compulsive, trying too many things at once and nothing for long enough.
Patient becomes less able to advocate for self and more vulnerable to the minefield of communication pitfalls with their doctor.

This is an example of how the classic disconnect plays out: where doctors think in terms of clinical signs, and patients think in terms of symptoms and life impact. This disconnect can have a particularly potent impact on the patient's mental wellbeing when discussing prognosis and progression. Why?

First of all, because eye doctors often really do not understand the degree, nature and extent of the life impact of the symptoms their patient is experiencing. Secondly, because patients who are struggling with major symptoms are necessarily struggling just as much mentally as physically, and therefore need hope to keep them going. Hope is vital.

Thus:

We should think both more broadly, and more specifically, about what "better" means.

"Better" can mean a whole lot of things.

We can talk about "better" in terms of clinical milestones: improvements to your staining, your tear film osmolarity, the state of your meibomian glands, and so on.

We can talk about "better" in terms of your symptoms, in numbers terms, like scoring yourself on OSDI regularly, or keeping a log.

We can talk about "better" in terms of activities. How long can I comfortably use a computer or read a book at a stretch? Can I do any of my favorite outdoor activities and if so for how long? Can I travel? Can I drive at night? Can I tolerate an office environment?

We can talk about "better" in terms of mental/emotional health. Am I in the midst of crisis, needing extra support and maybe treatment? Am I seeing myself come out the other side?

And we can talk about "better" in global terms. Is dry eye running my life, or has it been relegated to its 'proper' place - whatever that means?

Which then allows us to set specific goals - and go about achieving them.

For the dry eye patient who's been struggling for awhile, it is hugely in their interest to start articulating specific goals and sharing them with their doctor. A specific goal is an achievable goal! I might not be able to 'cure' my dry eye. But can I find a way to get more computer time, if that's really important to me? Very, very likely - because once I've specified the goal, I can then think more broadly when it comes to possible ways to achieve it. It's not just about dry eye treatments. It's about management and creative solutions.

Every one will have different life priorities and goals - and different tradeoffs we're willing to accept, different compromises to navigate.

What are your priorities? What are the tradeoffs you're willing to accept? What are the compromises you can make in order to achieve what REALLY matters to you?
  • For one person it's going to be all about an active lifestyle.
  • For another, who prefers to avoid medications it's going to be all about drugs: Is there a way I can get to a point where I'm using no Rx drops, or no pain meds?
  • For another it's going to be the dependencies: Can I get to a point where I don't have to do X routine absolutely every day in order to be OK?
  • For another, it's going to be aesthetics. Maybe you'll do absolutely anything except wear dry eye glasses.
  • For another, it's all about pain levels - period. You'll do anything if you can only keep it below a 4 most of the day.
Next up is what's already been touched on today - dry eye and mental health.

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