Wednesday, July 19, 2017

Dry Eye and Mental Health

"dry eye" vs. DRY EYE

For the benefit of those scratching their heads over the dry eye and mental health connection, I thought I ought to preface this post with, once more, the distinction between mild, irritating-but-not-life-altering dry eye symptoms, and the type of full-on dry eye situation that sends your OSDI scores rocketing and can so easily send your life into a tailspin when things aren't able to be brought under control within a reasonable amount of time.

Dry eye in all caps — and bear in mind I'm speaking in terms of symptom severity (i.e. what I experience), rather than clinical severity (i.e. what my doctor observes / test results), since they do so often diverge — is a completely different beast than the dry eye that just means putting in drops now and then.

DRY EYE is a high impact disease cloaked in a trivial-sounding name.

Depression is par for the course.

I find myself constantly wanting to reassure people who are engulfed by depression that this is normal when you're at a certain stage in a major DRY EYE journey.

Now, if I seem to get a bit pedantic, circling back over and over to underscore definitions and distinctions, it's because some things really are frequently and stubbornly subject to misunderstanding — hence I am not going to bother apologizing for being repetitive. 

So, first of all, when I say a major dry eye journey, I'm talking about major symptoms and major life impact, with or without an equally severe clinical condition identified by the eye doctor. Of course, the presence, and even more, the absence of major clinical conditions will play into the depression equation in their own special ways, but my real point is that many dry eye symptoms, when intense enough and/or persistent enough, are more than enough to routinely plunge people pretty far into depression. 

Secondly, when I say depression, I'm not talking about feeling low for awhile — I'm talking about something more akin to major depressive disorder. Something that takes you down — way down, in a big way, and for a considerable period of time. A major life event, in fact.

Suicidal ideation is common.

I don't know that I even have anything more to say about this than the simple fact of it. I think that it's vital for all those who are experiencing it to know that, no, it's NOT just them, and no, it has NOTHING to do with them coping poorly. This is a shared, common experience for which there are sound reasons.

And here are some reasons.

I think of it as a dry eye crisis, brought on by the cumulative impact of several factors at once. Which combination of factors, of course, varies, but there are threads in common.

The crisis comes at different times for different people, and can recur. One common pattern is a relatively sudden onset of massive dry eye symptoms that quickly escalate in spite of (and perhaps occasionally because of) a whole slate of treatments thrown at them in the early months. After the first three or four doctors and several months of increasing struggles, it's hard to avoid starting to panic about the future. Another scenario is someone who has had significant dry eye, clinically, for years, and been on many treatments, but only recently had a worsening of their symptoms that has just become too much to cope with when coupled with a worsening prognosis.

The specifics and timeline vary for everyone, but the common factor is the global impact on the person, particularly their mental health.

Here are a variety of factors I commonly come across in interacting with dry eye patients — physical, emotional, practical, medical, financial — that I believe all can contribute to the escalation of anxiety and depression in people with dry eye. This is not an exhaustive list.

  • Pain. Note: I use this term very broadly to encompass dry eye sensations that many people would not necessarily class as pain, but which have the same effect. For example, constant burning, grittiness, etc. — in general sensations that go away only when your eyes are closed, at best. Chronic pain in general is well known to be associated with depression. Meantime, the cornea (the tissue most affected by dry eye) has more densely packed nerves than almost any other human tissue. It is designed to hurt — a lot — when under siege.

  • Loss of sleep. Many people with night dry eye wake up repeatedly through the night to apply additional lubricants, or are woken up by eye pain. Fear of going to sleep is a powerful factor for many, too, especially those with recurrent corneal erosions.

  • Impact on common daily activities. Many people with dry eye cannot use a computer, read, or do other close work for long, and find their hobbies interfered with. Outdoor activities become much more difficult due to pain from wind, and also (for many) light sensitivity.

  • Restricted driving. Ability to drive may be limited to a small range due to pain from air conditioning and heating. When vision is impacted, driving may not be possible at all.

  • Impact on work performance. Office environments and jobs with any adverse environment (outdoors, or indoors with low relative humidity) can impair basic work efficiencies. Many workplaces are not friendly to the concept of accommodations, and some patients cannot safely discuss medical issues with their employers.

  • Fear of job loss.

  • High cost of treatment. Many of the most common treatments are not covered by insurance and are very expensive. Most dry eye patients have to use a great deal of over-the-counter products, which are also out-of-pocket expenses that add up quickly.

  • Generalized financial fears. As dry eye goes on, and particularly if symptoms are continuing to worsen, there may be a broad fear of the future due to the likelihood of decreased ability to work and increased medical costs.

  • Symptoms not quantified. The perception that it's all 'subjective' leads to a host of problems, from minimizing their significance in general to failing to diagnose correctly. There are scientifically validated instruments available to quantify symptoms, but few patients know of them and they are still used infrequently in clinical practice.

  • Counterproductive nomenclature. "Dry eye" is with us forever, but... as I argued recently in another post, "dry eye" is a terribly trivializing misnomer affecting how patients think about themselves and how effectively they can communicate about their experiences with everyone from their eye doctors to their employers to their personal support system. 

  • Misdiagnosis (and associated inappropriate treatments).

  • Inadequate information about one's diagnosis and prognosis.

  • Inadequate medical care. Patients commonly see several doctors before finding a specialist who can actually help, and in the meantime, may be spinning their wheels with unhelpful treatment and inadequate support while their condition is worsening.

  • Inadequate palliative care. Eye doctors as a whole are poorly equipped to educate patients about the non-medical or "lifestyle" steps they can take to address symptoms. For the first ten years I ran my DryEyeShop business, the most common phrase I heard from people on the phone after a conversation about simple remedies like moisture chambers was, "Why didn't my doctor tell me?"

  • Anger and/or guilt associated with elective surgeries. Anyone who has gotten dry eye from LASIK or elective blepharoplasty knows exactly what I am talking about. The psychological impact of an elective surgery gone awry is extraordinary and profound, even if uncomplicated by other factors — yet these patients always have other complicating factors, among which tensions with the surgeon may figure prominently, including as relates to failures of pre-surgical screening as well as post-operative treatment.

  • Sensation of isolation. While many people find understanding peers online, most people have no one near at hand who understands their experience.

  • Eyes being the organ affected. The innate fear of vision loss is well known and well documented. Any eye disease perceived as chronic can trigger this, consciously or otherwise — and more likely the latter. 

  • Belief that one isn't coping well. I deliberately left this for last, in order for readers to see the irony of it in context. It's very, very common amongst those in their first six months to a year particularly when they have had no validation of the magnitude of what they're dealing with, so they have no context for it. All they have is how it's being reflected back to them by doctors, peers, and family, and if the wrong things are reflected back, the impact can further cripple their ability to advocate for themselves. It's also dangerous, for those who may be approaching suicidal, because they become unable to talk about the psychological impact of their experience, since they have every reason to expect it will be interpreted as a massively inappropriate, inexplicable response to their situation.

Depression is par for the course. (See why now?)


Anonymous said...

God bless you for telling exactly how it is from the viewpoint of the patient. After a stem cell transplant for acute myeloid leukemia, I developed graft v. host disease (GVHD). When I was diagnosed with ocular GVHD, having experienced almost a year of inflamed painful eyes, loss of vision, and ultimately loss of career, I felt overcome with despair. That despair turned into severe suicidal depression requiring four months of psychiatric hospitalization. My life was given back to me when I began wearing scleral lenses. I am disabled by a chronic GVHD attack on my lungs, but if you were to ask me my greatest loss post-transplant, it has been my eyes. Let's not call this "dry eye;" let's call it a rare and debilitating eye disease that is often iatrogenic - the result of medical treatment.

Rebecca said...
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