You’ve heard it many times before.
“Why don’t you just use eye drops. They sell them in every drug store. Or that drop they advertise on TV all the time… something with an R?”
And then you say, “Restasis. I tried it. It didn’t work. And lubricating drops don’t work either.”
Or maybe you don’t say anything because you’ve said it all before…may times. And you’re just tired of hearing the same old thing — advice from well-meaning people who have no idea what you’re going through, or how to really help Dry Eye patients.
Chin up. We’ve all been there.
Even so, it can be a real problem when those offering advice are the ones who control your life, deciding which doctors you should see, and which treatments you should have. If they think lubricating drops are all you need, it can be a real uphill battle.
When that happens, you have to stay strong and forge your own path to healing.
Why People Think They Can Help Dry Eye Patients
But why do so many people think they know so much about Dry Eye when in fact they don’t? Why do they think they can help Dry Eye patients, when even some of the best doctors can’t?
One reason is the term Dry Eye. It’s an imprecise term for a host of conditions that can co-exist but that just doesn’t sound that bad. It’s not as serious as cancer. And it’s not an emergency like a heart attack. So what it is it? Just a little dryness in the eyes. Right?
Not when it’s severe.
Unless they’ve had it, or know someone who has, most people would never imagine that Dry Eye can change the course of someone’s life, impact relationships with family and friends, end careers, destroy quality of life, and control every moment of every day.
After all, it’s just Dry Eye. It’ll go away on its own. Right? Probably no.
Not that the only issue with Dry Eye is the term. Many people, for instance, have a real hard time getting a thorough diagnosis. Perhaps that’s the biggest issue. Because unless every co-morbid Dry Eye condition is diagnosed, and treated, you won’t feel better.
But still, the term does make a difference. Here’s why.
Dry Eye Spectrum Disorder
Consider autism spectrum disorder. It’s now generally accepted that with autism spectrum disorder a wide range of symptoms and severity are possible. Some children and adults are high functioning. But others aren’t. If properly diagnosed and intensive treatment starts early, the Mayo Clinic says that a big difference can be made in the lives of many affected children.
What if the same were true for Dry Eye patients? Some are high functioning, and others aren’t. What if everyone understood that Dry Eye is a spectrum disorder with a wide range of symptoms and severity?
First, if a friend told you to use an OTC eye drop, you’d be able to simply say you have Dry Eye spectrum disorder, and that at your end of the spectrum lubricating eye drops just aren’t enough. Being able to offer a simple explanation like that alone would be a relief.
More importantly, more doctors would readily accept that not all Dry Eye patients are alike. Those with mild cases of the disease might need nothing more than lubricating drops or lip wipes. But others, with more severe cases and other co-morbid conditions of the ocular surface, should undergo comprehensive diagnosis and treatment. And if treatment would start sooner — and no one had to embark on a heroic quest to find a doctor — maybe a big difference could be made in some lives.
When Something Doesn’t Have a Name
But unless Dry Eye gets a name that describes its complexity, things probably won’t change. Doctors won’t believe our far-flung, mysterious symptoms, and well-meaning friends will continue to tell us about those lubricating drops. Because when something doesn’t have a name, it’s very difficult to talk about, analyze, and understand. If it doesn’t have a name, you can’t point to it or point it out. It’s practically invisible… like so many Dry Eye patients.
So rather than use terminology that focuses on tear film (as in Dysfunctional Tear Syndrome) or the chronic nature of the disease (as in Dry Eye Syndrome), the medical community could adopt the term Dry Eye spectrum disorder. This way, those on the far end of the spectrum would get the attention they need, and those on the near end would have a better chance of staying there.
Autism Spectrum Disorder
Diseases and Conditions
Retrieved January 17, 2017
View the full report
Ocular Surface Disease: Cornea, Conjunctiva, and Tear Film
Part 2: Diseases of the Ocular Surface
EJ Holland, MJ Mannis, WB Lee
Saunders Elsevier, 2013
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