When you first started treating Dry Eye symptoms, you may have started out using lubricating eye drops, most likely the less expensive ones with preservatives. For a while, maybe they helped. Maybe they still do. Or, maybe they don’t.
If you progressed beyond just lubricating drops, along the way you probably used some prescription medications to treat infections, inflammation, or allergies.
It’s possible you used something to clean your eyelids and lashes, or something to get rid of demodex mites.
It would be comical if it wasn’t so serious. Dead serious. And expensive. Did we mention PAINFUL?
Are You Treating Your Dry Eye or Someone Else’s?
Whenever we Dry Eye patients get together we like to talk about our symptoms and treatments. It goes something like this.
This is how I feel. How do you feel?
Are you treating your Dry Eye or someone else’s?
This is what helps my symptoms. What helps your symptoms?
We ask and we tell because we’re all desperate to feel better and get our lives off permanent hold. But there’s a risk, one that we should all be aware of.
Are you treating your Dry Eye or someone else’s?
What works for one person won’t necessarily work for another person, because all of our Dry Eye conditions are unique and special to each of us, just like our fingerprints.
Does knowing that make you feel any better?
We didn’t think so.
Consider a broken leg. If you show up at the ER with a broken leg, it’s quite likely the doctor will order an X-ray before setting the bone. Why? Because your bone and the break are unique. The doctor can’t treat yours the same way he treated the broken leg that came in the ER two hours ago.
If later, you run into someone who has a broken leg, you’ll probably compare notes. This is how I broke my leg, what the doctor did, and what I’m doing now. You might even exchange tips on how to scratch those hard to reach spots, how to keep your cast dry, or how to manage pain.
Each Dry Eye Patient is Unique
But you probably won’t rip apart your cast and try to reset your leg yourself. For one it would be hard to do (not to mention foolhardy), but you also recognize that your broken leg is unique to you
So just be mindful, when you’re chatting or talking with someone about your Dry Eye symptoms and set of conditions, that you don’t start treating something you don’t have. It’s a good idea to check with your doctor before you try anything new.
And yes, ask questions. Lots of them. The more you know the better, because your Dry Eye condition is unique to you and needs to be treated that way.
Whenever I run into someone who tells me they have Dry Eye, one of the first questions I ask is how they manage it. I want to know their diagnosis and the treatments they’ve been prescribed, especially if it’s something they need to do every day.
Managing Dry Eye Today and Every Day
Many of these people say their doctors diagnosed Dry Eye. They use nothing more than over-the-counter lubricating eye drops and they’re good to go. Sometimes the best remedy is natural allergy relief. Years ago I was one of them — diagnosed with Dry Eye and sent on my way with a sample of preservative-free lubricating drops. Sadly, those days are long gone.
A Spiral of Worsening Symptoms
As my disease progressed, doctors neglected to diagnose — and also treat — other related conditions. This caused a spiral of worsening symptoms. When things got really bad, and as I became more and more frustrated, I began my own intelligence gathering. I discovered what might be happening with my eyes, and what might be done to improve my symptoms.
Gathering intelligence took many forms. I listened to my eye doctor(s), spoke with other patients or found them on social media, and read what I could. All of this intel helped me weed out the viable treatments from the vast sea of nonsense out there, or what just might not be a treatment appropriate for me.
How I’m Managing Dry Eye Today and Every Day
Now, after surgeries, many other treatments, and years of applying a slew of medications to my eyes, my routine, is much less involved. Though it’s still nothing to sneeze at.
Susan Howell at a nature preserve with Rosy, an Australian galah parrot.
This is how I’m managing Dry Eye today and every day. When I wake up I rinse my eyes with sterile saline solution, then clean my lids with Ocusoft Plus, a foaming lid scrub. After that I use a prescription allergy eye drop, one in each eye.
It doesn’t end there.
I take supplements daily — Omega 3 fish oil, a probiotic, and turmeric. At day’s end I apply a warm compress to my eyes. (This late-night compress gives me a few minutes to relax while enjoying the warmth of the compress on my eyes). Afterwards there’s another lid scrub. Then finally, a drop of Azasite goes into each eye to combat bacteria that causes my tear film to be soapy. Phew!
What If I Stopped?
With so much eye care to administer at home, I sometimes ask myself, what would happen if I stopped my daily routine altogether? Would my eyes feel even worse? I suspect the answer would be yes, but I’m just not willing to find out, at least not yet.
Or sometimes I wonder if all of that care really helps my eyes feel better. Honestly, it’s hard to be absolutely certain. Even with a daily routine, my symptoms are like a roller coaster ride. Some days my pain is manageable. On other days I want to rip my eyes out. Sadly, it’s like that for many chronic Dry Eye patients.
Inflammation, My #1 Enemy
One thing I learned when I was in intelligence gathering mode is how inflammation effects my symptoms. Whatever the condition — meibomian gland dysfunction, ocular rosacea, anterior blepharitis, poster blepharitis, or demodex mites – most treatments aim to reduce inflammation. It’s often the inflammation that leads to pain, swelling, redness, dry or watery eyes, and leaves us feeling miserable.
The question is, what’s causing the inflammation in the first place? When my doctors treated the inflammation itself, I never really felt better. Now, I’m addressing the underlying causes – demodex mites, bacteria, and so on – and that’s why my symptoms continue to improve.
Some causes of inflammation are obvious, but others not so much. Figuring out my triggers was the key, because there are many things that can cause inflammation.
Diet
One is diet. I’ve learned that my diet is a huge factor in the inflammation associated with many of the ocular surface conditions I face. Sugar, in particular, is the mortal enemy of my eyes. Unfortunately, I have a sweet tooth. Aaaargh! Over the years I replaced sugar with fruits, vegetables, whole grains, and nuts. It wasn’t easy, but it was a change that helped a lot.
My #1 enemy. Sugar.
At a recent office visit with my ophthalmologist, he confirmed just how important a low-sugar diet is for me. When he examined my meibomian glands and found I was producing less oil, he asked if I had changed my diet. Reluctantly, I confessed to eating three jelly donuts the day before, too embarrassed to even mention I had washed them down with a root beer float! I was busted, but also more determined to be disciplined about what I eat.
If you’re thinking about making changes to your diet, vitamins, or the supplements you take, it’s always a good idea to check with your doctor first.
Hydration
I keep a glass of water on the kitchen counter.
Another thing I learned was how important it is for me to stay hydrated. When I drink a lot of water my eyes feel better. (Up to 60% of the adult human body is composed of water). Making sure I drink plenty of water throughout the day is essential. I keep a glass filled with water on the kitchen counter as a reminder that I need to drink up.
Do My Part, Stay Informed.
When I leave my eye doctor’s office with the hope that a prescribed treatment will bring me some relief, I remind myself that I need to do my part, stay on course, and be disciplined about the treatment, whatever it may be. If a treatment is making things better, great! If things get worse, I tell my doctor so my treatment can be adjusted.
Plus I continue to stay informed. If I hear or read about some new treatment or supplement through the Dry Eye grapevine, I ask my doctor about it. (We’re all on the lookout for that magic bullet that might bring us relief, right?). In this way, I stay an engaged and informed partner in my own health care.
Choose Hope
There was a time when I thought I was running out of options, depressed, and losing hope. I know now that there was no need to lose hope. There are lots of treatments out there, and some made my eyes feel a whole lot better. It took some time to get diagnosed and find the right combination of treatments, but I finally did. As a result, managing Dry Eye today and every day has become a lot easier. Even though there are still days when my eyes are miserable, my worst day these days is miles better than my best day 1.5 years ago.
Anyone with moderate or severe Dry Eye symptoms knows how much the environment influences how their eyes feel each day.
Doctors Comment on Climate Change. Why Should You Care?
Is it cold outside? You’re probably having a bad eye day.
Is it windy? Go out there without eye protection and you’ll probably regret it.
Pollution, fumes, debris in the air, you name it, and we’re all looking for cover somewhere indoors, somewhere safe.
Though we all seem to enjoy some warmth and humidity, look out if the pollen count is high.
So it was interesting to learn what the American College of Physicians (the organization of doctors who practice internal medicine) had to say recently about president Donald Trump’s executive order on climate change. In a nutshell, they don’t like it, because they don’t think it’s good for people.
Doctors Comment on Climate Change
The ACP criticized the president’s executive order noting that it “will have a devastating impact on public health.”
According to a March 28, 2017 ACP press release, Trump’s order directs the Environmental Protection Agency (EPA) to reduce the U.S. push on combating air pollution.
“[The] executive order moves us in the wrong direction on this issue,” ACP’s president Nitin S. Damle, MD, MS, MACP, said in the release. “It signals a retreat from our nation’s efforts to curb carbon emissions and address climate change.”
In a 2016 paper, ACP noted the consequences of climate change on public health and the health of individuals. The paper cited increasing rates of respiratory and heat-related illnesses, insect and water-borne diseases, and issues related to behavioral health. ACP had estimated that previous environmental rules reduced mortality and morbidity rates annually: 3,600 fewer deaths, 1,700 fewer heart attacks, and 90,000 fewer asthma attacks.
ACP regretted that less, rather than more, action will be taken to protect seniors, people suffering with chronic illnesses, the poor, and children.
Exacerbating Dry Eye Symptoms
Unfortunately, Dry Eye is one of those chronic conditions. Plus, many of us also suffer from autoimmune conditions. So great. Double whammy.
Even though environmental changes can be slow, it may be prudent to listen when doctors comment on climate change. They may have a point that’s important for those of us who can’t take eye comfort for granted.
You probably remember a time before you had any Dry Eye symptoms. Looking at anything for as long as you wanted wasn’t a problem. There was no pain or burning . You could read or work for hours without watery eyes or other discomfort. Driving was once a breeze. Just get in the car and go.
The Dry Eye Roller Coaster. Will You Ever Get Off?
You didn’t give a thought to your eyes back then, unless you wore glasses or contacts. But they weren’t nearly as much of a bother as what you’re going through now.
Now, it’s like being on a Dry Eye roller coaster that never ends. Some days are OK (the “good eye days”). Others are bad or worse. Plus, there’s an endless array of treatments.
Endless Treatments
Warm compresses. A variety of drops. Ointments. Contact or scleral lenses. Lid cleansers and demodex killers. Maybe surgery. Procedures to open your meibomian glands. Endless appointments with your doctors (the good ones). Brief encounters with some doctors (the bad ones). Prescriptions galore. Countless tiny plastic bottles adorn your bathroom. Your diet changes: no sugar, no dairy, no caffeine, more water. A lot more water. Prescription pills and supplements. And who knows what else.
Plus there’s the endless variety of possible diseases. Some, everyone’s heard of, like Dry Eye, styes, bacterial infections.
For these you might even need a dictionary just to help with pronunciation. (Even our website’s digital voice has a hard time pronouncing some of these correctly, like conjunctivochalasis. It doesn’t recognize that the “ch” is pronounced “k,” not “ch.” Click on the Listen button at the top of the page. You’ll see what we mean).
Getting off the Dry Eye Roller Coaster
All of this can be incredibly overwhelming, especially if you learn you have several of these conditions happening at the same time, in your tiny little eyes. You might even wonder if that much can go wrong with the heart at the same time? With the liver? With the blood?
It can feel as overwhelming as a cancer diagnosis, although we’ve heard that some (of the bad) doctors say, “At least you don’t have cancer.”
Well, at least your doctor was able to diagnose all of these conditions. Now you can start doing something about them, whatever that may be, even if it takes a long time.
It’s a sign that finally your Dry Eye roller coaster ride is slowing down, and maybe even coming to an end.
In my last blog post I promised to share 11 tips for keeping busy because, if you have Dry Eye symptoms, keeping busy can help distract you from your symptoms and give you some relief. Or, even if you don’t find relief, at least you’re accomplishing something, staying positive, and feeling like you’re the one in control, not your eyes. It’s not always possible, but it’s always worth a try if you can manage it.
These are 11 things I do to help keep me busy and distracted from my Dry Eye symptoms.
11 Tips for a Better Dry Eye Day!
1. Keep a Schedule, Make a List
Keep a schedule or make a list of tasks you plan to accomplish. Even if you feel horrible, keeping to a schedule and knowing that you’ve accomplished the tasks you set out to do, will help to maintain order in your life. That alone can help reduce stress.
2. Talk to Someone who Makes You Laugh
Talk to family members and friends who make you laugh. Laughter in the Dry Eye world can set the tone for your day or night. Plus it can also bring tears to your eyes. Laughter, no matter where it comes from, can be amazing for your frame of mind.
3. Find Support
Join a Dry Eye group. Interacting with others that are also afflicted with this disease can help you gather valuable information. You’ll find support and realize that you’re not alone. There are many of us out there.
Remember, we’re all different. What might work for some may not work for you. So don’t get discouraged if you find that a particular medication or treatment worked well for someone, but you aren’t getting the results you hoped for. That just means you’ll have to keep working at it until you get better results.
4. Eat Something Crunchy
Crunchy foods seem to distract the mind. Consider a bowl of celery, carrot sticks, radishes, pretzels or nuts. Even just chopping vegetables can be a good distraction for the mind.
5. Listen to a Recording
If reading is no longer an option, try relaxing with an audio book or some good music.
6. Plant a Garden
Plant a garden or, if you already have one, spend time pulling weeds and maintaining it. If sunlight bothers your eyes, wait for a shady time of the day or wear your sunglasses. I’ve found pulling weeds, as tedious a task as it is, puts me in a Zen like state.
7. Rediscover the Great Outdoors
Blogger Susan Howell at University of Florida fossil dig, November 2016
Rediscover the natural world. Find a comfortable outdoor location and just close your eyes and listen to the sounds of song birds, the breeze rustling through the trees, or water lapping along a shoreline. Connecting with nature eases the mind, body and soul.
If you can, take a walk or engage in any other outdoor activity. Just be mindful of your eyes and wear sunglasses, preferably wrap-around.
8. Take a Nap
If your day allows it, take a short nap in the afternoon. I find resting my eyes for a period helps me through the later part of my day.
9. Play with your Pet
Blogger Susan Howell with her puppy, Bindi.
If you own a pet, spend some quality time each day together. Playing with my dog or taking her for a walk gives us a chance to spend some time together while we’re getting a little exercise. Speaking of which…
10. Exercise
Exercise when you can. A brisk walk, dancing, running, whatever gets you moving, helps release endorphins, which in turn provide a sense of well-being.
11. Color
Finally, one of my favorite stress reducers is an adult coloring book. On days when I find myself obsessed and worried about my eyes, sitting down and coloring a picture seems to calm me down. Just don’t try it if you’re eyes are feeling bad already because you might not blink enough.
Facing each day as a Chronic Dry patient is an enduring task. We have to learn to cope with what’s now our new normal. We may have limitations, pain, maybe fear, or even sadness, but we still need to live and move forward with our lives.
Hopefully, my tips for a better Dry Eye day will help some of you get through your day. In the meantime, stay strong, hopeful, and remember to always be your own advocate.
Chronic Dry Eye is a complicated disease. Why we suffer and the severity of this disease differs from patient to patient. The one thing we all have in common is the frustrating search for relief.
All of the other doctors I’d seen had said there was no cure for chronic Dry Eye, only treatment and management. Each day I followed their instructions and applied what seemed to be the universal approach to managing this disease: over the counter lubricating drops, Omega 3 supplements, warm compresses, eyelid scrubs, and then Restasis. Sadly, these treatments didn’t make a dent in my discomfort and instead left me filled with anger, stress, anxiety, and depression.
As hope faded, the possibility of ever leading a normal life again appeared out of reach. This sad situation might sound familiar to many of you, but it doesn’t have to be that way.
4 Steps for a Better Life with Dry Eye
So what’s a Dry Eye sufferer supposed to do to end the suffering and find relief? These are four steps I took that got me on track to finally feeling better. I’m not completely symptom-free yet, but there’s no comparison to how much better my eyes feel today. Maybe if you take these steps your eyes will feel better too.
1. Find a doctor
First you have to find an eye doctor who specializes in Dry Eye diagnosis and treatment. Why? Well, not all eye doctors are created equal. The first ophthalmologist I ever visited was a cataract surgeon who basically dismissed my symptoms and pain. He said it was just an inconvenience I should learn to live with. Yeah, right.
Seeing him was like ordering lasagna at a Chinese restaurant. Big mistake!
Blogger Susan Howell at a University of Florida fossil dig, November 2016, 8 months after AMT surgery.
If you’re lucky enough to find the right doctor on the first try, fantastic. You’re one of the lucky few. If not, continue your search and don’t stop until you find the right doctor. Just don’t ignore any red flags along the way. As much as we patients want to believe and trust doctors, it’s also important to trust your own instincts. If your doctor suggests a treatment that you’re not familiar with, or somehow doesn’t make sense, do your own research and, if necessary, get a second, or even a third, opinion.
In my case I had three doctors tell me I would need surgery to correct conjunctivochalasis. My research eventually led me to my current doctor, an ophthalmologist who specializes in Dry Eye. Last spring he preformed amniotic membrane transplantation (AMT) to remove the chalasis and the pinguecula. Without those surgeries my eyes would still be as miserable as ever.
2. Get treatment for anxiety and depression if you need it
If you find that you’re suffering from anxiety or depression, go to your primary care physician and explain what you’re going through and why. Dry Eye symptoms, and the impact they can have on your life, can easily cause, or exacerbate, anxiety and depression. Again, if your current doctor isn’t empathetic or listening to you, find a doctor who you can connect with. Emotional support is crucial when dealing with this disease.
3. Learn about the disease
Knowledge is power. Learn as much as you can about your diagnoses. Familiarize yourself with the medical terminology and research the latest treatments. The more you know, the easier it is talk with your doctor and understand what he’s saying.
Have a list of questions ready at your appointment. Write them down before you go. It’s easy to get caught up in your examination and forget what you wanted to ask. If your research led you to a treatment your doctor hasn’t offered, ask about it. Remember, you’re there not only for treatment. You’re there to learn too.
4. Stay busy
You finally found a good doctor. You’re undergoing treatment and handling your emotions. But you still don’t have the eye relief you were hoping for. Keep in mind, as of now there is no cure. I’ve found that while my symptoms have improved a lot, I still experience burning pain daily in my eyes due to MGD and possibly an allergy. My doctor continues to help me with these.
That’s why I consider my eye treatment a work in progress. Plus I’ve learned that in order to live as normal a life as possible, I needed to focus my attention away from the pain and stress by keeping my mind and body busy. Keeping busy helps me get through the toughest days and the easiest days.
These 4 steps for a better life with Dry Eye took me from no life at all back to something almost normal.
Next time I’ll share 11 ways to stay busy with Dry Eye.
This is the true story of a young woman, 31 years old, who lived on the other side of the world while suffering with Dry Eye. We felt it important to share her story with our readers to raise awareness of the struggles and tragedy that can result from this condition.
Every time the young woman blinks, there’s stabbing pain and discomfort in her eyes just above the iris. It’s been there for seven months. She just can’t take it anymore.
This should never happen.
Each doctor the young woman sees tells her something different. One says she has blocked meibomian glands. Another says her glands aren’t blocked. Yet another says her eyes are a little dry, and there are dry spots on her corneas.
She doesn’t understand what’s going on. She’s confused. Why do all the doctors say something different? One says to apply warm compresses and lid massage. The other puts her on a steroid drop. The third tells her to use lubricating drops. None of these treatments help.
Why can’t the doctors help me?
The doctors don’t notice her declining emotional state. She’s becoming desperate. She tries reaching out to others like herself. She finds them online — people on the other side of the globe who’ve had similar symptoms. “Why can’t the doctors help me?” she asks them. “Why do they all say something different?” This should never happen.
The people help her in any way they can. They text her or talk to her on the phone. Some encourage her and give her tips on improving her comfort. They say they’ve been through the same thing — their doctors said different things, but finally only one was able to help.
They ask her if she can come to the U.S. and seek this doctor’s care? His office takes her calls. The staff tries to help her, calm her. The doctor answers her questions. He helps in any way he can. But he can only do so much from such a long distance without examining her.
Even if he could help, it’s too far for her to travel. He’s on the other side of the world. And her family won’t support her. She needs their support. She needs it desperately.
Terminate the call
She asks one of her new Dry Eye friends if they’ll talk to her family. Maybe if the family hears it from someone else — what it’s like to suffer with this kind of pain — maybe they’ll understand. Maybe they’ll change their minds and at least believe she’s in agony, suffering, desperate.
The young woman arranges for the phone call. Her family is on speaker. They say, “Terminate the call.” The friend asks, “Why won’t you talk to me? Are you experts? Do you have this condition? Are you doctors?” Still, they refuse to talk. They refuse to hear what it’s like to live with this horror, with this agony in your eyes. “Terminate the call.” The family is a huge disappointment. This should never happen.
They young woman apologizes for her family’s rudeness. She’s defeated. She’s crushed. But the friend reminds her that she’s not alone. Many people are trying to help her. Forget about her unsupportive family. This is her new family. The young woman hangs up the phone.
A few mornings later she calls the Dry Eye friend, weeping, hysterical. The rope is ready, she says. She doesn’t know what else to do. She’s out of options. The pain is unbearable.
Breathe
The Dry Eye friend tries to calm her down. Breathe! The young woman puts away the rope. The friend encourages her to contact a local suicide prevention hotline and sends a link to one in her city. We’ll get through this together. We’ll find you a doctor. Breathe! Just breathe!
They find a doctor closer to her home, but in a different city. The young woman will have to fly there. There’s no guarantee that this doctor can help, but his website talks about difficult conditions he’s treated that sound like something the young woman may have. He’s written papers about them. He sits on expert panels discussing them. Maybe he can help. There’s no guarantee, the friend says. If he can’t help, then we just move on and look for someone else. It’s what all of us did, and you will too, until you find the right doctor.
The young woman decides to make an appointment with the new doctor.
Every few days the young woman calls and messages her Dry Eye friends on the other side of the globe. She needs their support while she’s waiting for this appointment because she’s in agony. They give her tips and encourage her. They hope she’ll travel across the globe to see their doctor.
It’s a living hell, and no one around the young woman wants to understand. She has one friend left nearby. Everyone else is busy. Everyone has their own life to lead.
This should never happen
The appointment in the far-away city with the new doctor finally happens, but it doesn’t go well. Only the doctor’s assistants examine her and perform all the tests. Then the doctor comes in and spends just three minutes with her. He doesn’t examine her eyes himself and says it’s allergies. He says she’s imaging the pain. It’s all in her head. She should go home and forget about it. He prescribes steroid drops even though they didn’t work before.
The Dry Eye friend is infuriated when the young woman shares how badly the appointment went, but stays calm and calms the young woman. At least we ruled someone out. At least now you’ll never wonder if that doctor can help you.
The friend sends a link to yet another doctor’s website. Maybe he performs the surgery the young woman needs. Plus, the young woman will call her insurance company and ask if they have anyone who performs this surgery. If they don’t, that means she’ll just need to keep looking. Ok? She’ll just need to keep looking, or fly across the globe where there’s a doctor who can help. Ok.
A plan and a call
The young woman says she’s had a headache for three weeks. She sounds both defeated and encouraged. Regardless, at least she has a plan, even if she’s still in pain. She’ll call her insurance company. She’ll make an appointment with this other doctor. It’s Thursday, and she’ll call her friend again on Monday.
Instead the friend gets a call on Saturday and it’s not from the young woman. It’s from one of the young woman’s Facebook friends who also had been trying to help. “No, no, no!” They weep together on the phone and are inconsolable. They can only imagine the young woman’s last desperate moments. This should never have happened.
They wonder, will her doctors ever know that their actions lead to the young woman’s death? Will the doctors think that because she hasn’t returned their diagnosis was accurate and the treatment worked…so it will work for the next patient too?
On the phone, they recall conversations and messages with the young woman who desperately needed help. They’re angry and grieving. This should never happen again.
Unravelling the Mystery
We’ll never know for sure, but the unbearable pain felt by the young woman in this story was most likely due to undiagnosed damage to the ocular surface. Conditions such as conjunctivochalasis and superior limbic keratoconjunctivitis (SLK) can create the sensation of something stuck in the eyes. Plus, these conditions are commonly found in the presence of another disease, meibomian gland dysfunction, that is sometimes diagnosed, but often treated ineffectively. It too can feel like something is poking or stabbing the eyes.
For reasons we cannot comprehend, doctors often miss these conditions when patients who are diagnosed with Dry Eye continue to complain of chronic foreign body sensations and pain in the eyes, even after standard treatment. When that happens, it’s maddening, because all the doctors would really have to do is crack open a text book like Ocular Surface Disease: Cornea, Conjunctiva, and Tear Film by Holland, Mannis, and Lee. It’s all right there, with color photos. Plus searching for research on the subject on pubmed.gov is free. So why don’t they do it?
Who knows. Maybe they think they know all there is to know already. Maybe they lack intellectual curiosity. Or maybe they’ve seen too many patients that day already.
Just like the young woman in this story, each of the board members of the Not A Dry Eye Foundation embarked on a herculean search for an eye doctor who would help. Some tried to help us. Some couldn’t care less. Finally, one miraculously helped us tremendously. In the process, we saw dozens of doctors and crisscrossed the country seeking relief.
Supportive Families
To a one, our families were just as perplexed by our symptoms, but they believed and supported us. It’s because of them that we’re still here (and because of the doctor we found. He helped us and many, many other traumatized patients).
Why the young woman’s family wouldn’t believe her pain will forever remain a mystery. Maybe it’s because her parents’ died when she was young. Maybe it’s because she lived in a patriarchal society. Or, maybe it was something else altogether. Who really knows.
Regardless, the combination of physicians who didn’t help, coupled with a family that was unsupportive, clearly drove her to take her own life.
This is why we will continue to share this young woman’s story, and our own, so that doctors will take notice. So they’ll all believe us and maybe one day it will be easier for anyone with Dry Eye to find a doctor who can help.
Always remember you are not alone. Many of us have experienced the kind of eye pain that you’re experiencing. It’s just a question of finding the right care.
“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.”
Dry Eye Spectrum Disorder. How a Name Can Help Dry Eye Patients.
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 exactly.
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.
References
Autism Spectrum Disorder
Diseases and Conditions Mayo Clinic
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
If you’re a Dry Eye patient still looking for a New Year’s resolution, below are 10 different ones to pick from. You can tailor any one to your specific situation.
#1 New Year’s Resolution for Dry Eye patients
Or maybe you’ll be inspired to make up your own. Either way, don’t miss our #1 New Year’s resolution for Dry Eye patients below.
#10. I will stay hydrated and drink plenty of water.
Staying hydrated is important because the eyes secrete 5 – 10 ounces of water each day. If you’re dehydrated systemically, you won’t be producing the tears you need.
#9. I will take frequent breaks while reading anything including my computer/smart phone/tablet/etc.
When we read, whether it’s a book or smart phone or other device, we tend to blink less than when we don’t read. Taking frequent breaks gives you a chance to rest your eyes, blink more often, and replace the tear film that evaporated while you were reading.
#8. I will remind myself to blink when I’m on the phone.
We sometimes stare into space when we talk on the phone. Some patients cope by keeping their eyes closed whenever they’re on the phone. That might work for some. But for others, it might work best to remember to blink.
#7. I will touch my eyes only immediately after washing my hands.
Dry eye patients tend to touch their eyes a lot. For some, there are endless eye drops, ointments, or warm compresses. For others, there are contact or scleral lenses. Whatever the reason, make a vow to always wash your hands first. Introducing bacteria into or around the eye is the last thing you want when you’re already suffering with Dry Eye.
#6. I won’t panic if I feel a new symptom.
The eyes have the highest concentration of nerves – 300 to 600 times more than any other part of the body. The tiniest spec of makeup or a particle of dust can feel like a boulder. So it’s no wonder that, as our condition changes, our eyes feel different things. Don’t panic. But do tell your doctor what’s going on so the new symptom can be evaluated and treated if necessary.
#5. I will be kind to other Dry Eye patients.
We see all too often Dry Eye patients attacking other Dry Eye patients on social media and other public forums. This saddens us to no end. Remember, we’re all just patients, suffering with Dry Eye symptoms. And every patient deserves compassion and understanding. So vow to be kind to other patients. You never know who might be suffering from so much pain that they’re thinking about ending it all.
#4. I will tell my doctor what’s going on.
No doctor is clairvoyant. It’s imperative that doctor’s know what’s going so they can take appropriate steps to help you. Only you can tell your doctor what’s really going on.
#3. I will describe my symptoms very specifically.
This is a variation of #4 above, because doctors really aren’t clairvoyant. If you say, “my eyes feel awful,” your doctor won’t be able to help you much. But if you say, “there a stabbing pain in my right eye, lower lid, outer corner, and my lid margins burn,” your doctor may have a very good idea about what’s going on. With that information, she’ll be able to diagnose and help you.
#2. I will not give up until I achieve comfort in my eyes.
This really could have been our #1 New Year’s resolution for Dry Eye patients, because so many of us struggle to achieve comfort. The fact is, many of us were in very bad shape once. But we didn’t give up. And we’re here to tell our stories of hope. We speak from experience when we say that it’s important to persevere and not give up!
And now our #1 New Year’s resolution for Dry Eye patients.
#1. I will learn everything I can about my condition.
Knowledge is a crucial tool on the journey to healing. It’s like water in a hiker’s canteen. It nourishes and refreshes. It gives strength. When the canteen is empty, it’s not so good.
When you drink in knowledge, you give yourself power. You become the master of your own destiny. You have the means – the nourishment – to achieve your goal.
When you learn how the eyes work, what a blink does, what your eyes secrete, and then you learn about your symptoms – what they mean and how they can be treated – you’re moving out of a position of weakness and into a position of power.
With knowledge, you can ask your doctors better questions and discuss your treatment plan. You’ll have the confidence to think about your symptoms – carefully and thoughtfully. What’s causing them? How long will they last? Can you do something about them at home right now? Anything? Why or why not?
Knowledge is Power
When you learn about Dry Eye, you’ll begin to understand that you aren’t alone. There are others out there just like you. And the more we all collectively know about the disease, the better patients and patient advocates we will be.
And there’s no excuse for not learning about Dry Eye. There is plenty of free information on this website to empower anyone who is interested and willing to learn. We’ve even provided an audio button so that Dry Eye sufferers don’t have to read. So no excuses, from patients, their families and friends, and even doctors.
Knowing a lot about a disease — any disease — transforms a patient into a partner in their own health care. There’s a saying, “Knowledge is power.” Seize the power. It’s right here at your finger tips.
Dry Eye is the worst houseguest ever for one very simple reason. It never comes by itself. It’s always dragging around countless other family members who want to stay for a long, long time.
Maybe even a bit of conjunctivochalasis — or chalasis for short — right on the eyes.
How about a few demodex mites? Have enough room and food to house them for a while? Sure you do. We all do. Especially as we get older.
What about that recurring pink eye? Why does that keep coming back? Didn’t you just give it $60 to go off with those antibiotic eye drops and give you some peace and quiet for a while?
Or that pain in the corner of your eye that sometimes feels like a knife and sometimes feels like an eye lash. What’s that all about? So rude to show up uninvited.
Still not Convinced that Dry Eye is the Worst Houseguest Ever?
There’s that feeling of soap and those frothy tears. How long have they overstayed their welcome? Wait, they never were welcome. Now it’s impossible to get them to leave… once and for all. Somehow they keep finding their way back. How?
Are your eyes red? Do they feel awful after you’ve been working or looking at a computer screen for a while? What about your eyelid margins? Are they white and shiny like porcelain, or does it look like someone’s been leaving their dirty dishes lying around. All of that debris. Endless, endless debris in the eyes and eyelashes. Don’t they know how to clean up after themselves?
And speaking of endless, what’s up with all those eye drops or warm compresses? At least the compresses are relatively cheap. But the eye drops… seriously? How much does it cost to keep one single drop happy?
Are your eyes watery? Do you blink all the time? Does it feel like something’s just stuck in there forever and won’t come out? Something gritty or perhaps even a sheet of tissue paper? Yep, that’s exactly what we’re talking about — the houseguests that never were invited and now just don’t know when to leave.
More Reasons Why Dry Eye is the Worst Houseguest Ever
And it’s not as if these houseguests aren’t cramping your style. You probably haven’t sat down with a good book in ages, or watched a TV show without interruption. Thank goodness for Netflix and the pause button.
Sometimes they even get in the way of going to work. But you have to work, because who else is going to support this unwelcome crowd.
And after all that work, you’d think they would at least let you have some time to yourself. But no. When was the last time you went to a movie theater? Ride that motorcycle lately? Sat in front of a fireplace? Even your choice of restaurants, if you can still go out to eat, is probably a lot smaller these days. If it’s any consolation, at least you have your favorite warm compress at home to keep you warm, because sometimes even your pets have to go to make room for these awful houseguests.
But in reality it’s no joke. Dry Eye, and its many relatives, can cause untold devastation. Truly heartbreaking devastation and immeasurable physical and emotional pain.
Good Riddance to Dry Eye, and Good Night
And as far as pain goes, the only good thing about it is, once it’s gone, at least you can’t remember it. You can remember that you had it. But you can’t actually feel it. Plus when the pain, or whatever you’re feeling, is gone, probably some relative of Dry Eye is gone too.
And to that we say good riddance, good bye, and good night!
And to everyone else Merry Christmas, Happy Hanukkah, and joyful holidays! May you all have many, many, many good eye days.
