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.
Patients often complain that even after they’ve started treatment, their painful Dry Eye symptoms don’t stop. Their symptoms may be constant or intermittent. There may be burning, pain, a foreign body sensation, or other discomfort. It can be an agonizing 10, on a scale of 1-10. Or just an annoying 1. It might be in one eye or both. In one very specific spot, or all over.
The fact is, the pain and discomfort of Dry Eye can persist despite treatment and lifestyle changes.
Here are 12 reasons why Dry Eye symptoms don’t stop and sometimes just keep coming back.
1. It’s a chronic condition
The sad truth about Dry Eye is that it’s a chronic condition. One magic pill, drop, ointment, or single treatment usually won’t fix it. Once Dry Eye symptoms set in, it becomes a question of managing them, and finding out which treatments work for you. Some conditions associated with Dry Eye, like conjunctivochalasis or a bacterial infection, can be cured. But the chronic nature of the disease requires perseverance and patience.
2. It’s a multi-factorial condition
As mentioned above, many conditions are associated with Dry Eye making it a multi-factorial disease. There’s aqueous deficiency, meibomian gland dysfunction, infection, conjunctivochalasis, demodex mites, and more. And the causes of these are numerous. There are environmental factors, life style choices, systemic diseases, plus many other factors, all of which can contribute to the disease and symptoms. So if you only address one condition, you won’t get complete relief because something else that requires treatment will still be going on.
3. The eye feels only the most prominent sensation
Once you begin treatment – effective treatment – you can expect to get some relief. But it’s important to keep in mind that the eyes only feel the most prominent sensation — one sensation at a time. So you treat one symptom and then another symptom emerges. Why? It’s possible, and even probable, that a second condition was always there, but you just couldn’t feel it because it was masked by the symptoms of the first condition.
And this can even happen to either eye. You feel only the worst thing and let’s say it’s in your right eye. You treat that and now you have discomfort in your left eye. Whatever is now happening in your left eye was probably always there, you just couldn’t feel it because of the discomfort in the right eye.
If this happens, don’t despair. And let your doctor know that there’s a new symptom that requires attention.
4. Different conditions cause the same symptoms
One of the most confusing aspects of Dry Eye is that different conditions can cause the exact same symptom. For example, even after meibomian glands are probed there can still be a foreign body sensation or pain in the exact same spot. In this case, you may need more or deeper probing. Or maybe there’s inflammation or chalasis on the surface of the eye. Maybe there’s an eye lash that’s growing in the wrong direction, or a muscle spasm in the eye lid, or something else.
But it’s impossible to say exactly what’s happening without a thorough exam and an accurate diagnosis. So if a symptom persists, it’s important to follow-up with your doctor, because she can’t help you if you don’t tell her what’s going on.
5. You haven’t been diagnosed correctly so you aren’t being treated correctly
So many of us have had this experience. We’re diagnosed with something and we start treatment, but there’s no change in our symptoms. If your doctor didn’t start with a thorough examination in the first place, it’s likely you weren’t diagnosed accurately and so you’re also not getting treated correctly. If you think this is the case, it’s best to seek care with another doctor.
Check out the information on Dry Eye diagnosis on our website and familiarize yourself with what a comprehensive exam looks like. If you’ve only had a Schirmer test without numbing drops and your meibomian glands haven’t been examined, for example, you probably haven’t had a thorough exam.
Furthermore, conjunctivochalasis is often overlooked, neither diagnosed nor treated. And the role of meibomian gland dysfunction in chronic eye pain is not yet widely accepted and understood. If not treated, both of these conditions can cause chronic eye pain and discomfort.
6. Something hasn’t been treated…yet
If you have a good doctor and are undergoing treatment for a variety of conditions, he may recommend that treatments follow a specific order. First this treatment, then that, then another, depending on your specific set of conditions.
Be open with your doctor about your symptoms. Discuss the sequence of treatments and what you can expect. Your doctor may have something planned for you that you don’t know about, but it might be something that you shouldn’t undergo just yet.
7. Something new happens
You’re going along with treatment and you’re beginning to feel better, and then suddenly something happens that sets you back. It could be an eye injury, an infection, a systemic condition, something just falling in your eye, or who-knows-what else.
When this happens, it can feel like a major set back and you can easily get discouraged. Don’t. Life happens — to our eyes all the time. Take it in stride. Address it. Contact your doctor immediately even if your next appointment is in two weeks. Deal with it now, rather than later. Think of this setback as just another leg of your journey to healing.
But we agree, these setbacks can be exquisitely frustrating.
8. You may have allergies or sensitivities to topical medications
Your prescribed treatment could itself be causing discomfort, or even harm. If you have allergies, or even just sensitivities, to your topical medications, you might feel worse — and even get worse — rather than better. Allergies and sensitivities cause inflammation, and chronic inflammation is the enemy of the meibomian gland and the ocular surface.
It’s important to tell your doctor right away if you think your medication is exacerbating your symptoms. You might have to stay on it for a while. But your doctor may have tips to minimize symptoms. Or you might have to switch to something else, or stop it altogether. Regardless, let your doctor know.
9. Systemic conditions may play a role
There may be underlying systemic conditions contributing to your symptoms – autoimmune disease, hormone imbalance, and many others. If these aren’t addressed effectively, your eyes might not feel better. Talk to your doctor about what systemic conditions you might have. Some, like age, are unavoidable.
10. Are you telling your doctor about all of your symptoms?
Be sure to tell your doctor about all of your symptoms, and be as specific as you can about what you’re feeling. Rather than saying “my eyes feel awful.” Say, “my left eye burns and feels like there’s soap in it. A 4 (on a scale of 1-10). And there’s an intermittent stabbing pain in my right eye, in the upper inner corner. An 8, that happens right when I wake up and lasts for 2-6 hours, but sometimes all day.”
It may seem like a lot of information. But the details will help your doctor diagnose your symptoms accurately. And an accurate diagnosis is always the first step in effective treatment.
11. Your doctor isn’t helping you
You may have a bad doctor. Or your doctor may be a good person and a good ophthalmologist or optometrist. But your doctor may not know enough about Dry Eye to diagnose and treat you effectively. If that’s the case, it’s best to seek the care of a Dry Eye specialist or an ophthalmologist specializing in cornea and external disease.
12. Things happen and change over time
Lots of things change over time. We age. We change our daily habits. Our bodies change. We get new jobs. We move. There’s light and darkness. Dust or pollen in the air. Car exhaust. Seasons. Seasonal allergies. Seasonal flu. Changes in temperature and humidity. Binging on Netflix. Different foods and cooking fumes. The stress of work. Too much time staring at a computer or cell phone. Staying up late. Not enough sleep. A long drive.
Anything can happen. It can happen suddenly once, over a long period, or something in between. But all of it can contribute to eye comfort or discomfort.
So whenever possible, it’s best to make choices that lead to comfort, because the stuff that causes discomfort is sometimes unavoidable.
When Dry Eye Symptoms Don’t Stop
With so many different possibilities, it’s no wonder that even after starting treatment, sometimes painful dry eye symptoms don’t stop. When this happens it’s important to persevere, follow-up with your doctor, and not lose hope. We know this can be extremely difficult, and sometimes seemingly impossible. But step by step, inch by inch, you can reach your goal. It may be a long and difficult journey. But it will be worth it when you look at your loved ones or a sunset… with relatively comfortable eyes. You’ll thank yourself.
For many Dry Eye patients managing the disease is the journey of a lifetime. Those of us who embarked on the journey to healing, know that lots of people helped us reach our destination. Family members, friends, neighbors, doctors, their staffs, pharmacists, nurses, shuttle drivers, even the mail carrier bringing a fresh supply of some critical medication, and many, many others, were all there for us when we needed them most.
Supporting Dry Eye Patients on Their Journey to Healing
Many people helped us in whatever way they could. Some opened their wallets, others their homes. Some people cooked for us and others cleaned. Some became our drivers and others traveled with us hundreds and even thousands of miles, staying with us in far-away cities. When the pain in our eyes was unbearable, there were those who Googled anything and everything related to the disease, searching for hope on our behalf. Some prayed with us and for us. Help came in many forms and on many days, many, many days.
And then there were our doctors who diagnosed and treated us. Some responded to our desperate texts, calls, and emails – at all hours of the night. Some held our hands or stroked our foreheads before surgery to reassure us. Their staffs took our calls and listened to us patiently.
Yes, it was their job, but it wasn’t always an easy job because the pain of Dry Eye could make us irrational, unreasonable, and inconsolable, crippling even the most stoic among us. Still, they helped us.
Our gratitude to each of these individuals knows no bounds. No matter what we do, no matter how hard we try, we will always be indebted to our legions of supporters.
On this day of giving thanks, we extend to each of them our deepest and most heartfelt gratitude. Thank you!
And now we’re asking for your support.
Supporting Dry Eye Patients on Their Journey to Healing
On average, about 250 – 300 people from around the world visit this website each day. Most are people just like us, looking for information about Dry Eye, wondering about their symptoms, wondering what might be the causes, and if there are any viable treatments.
We’d like to be able to continue this service and we’ll be able to with your generous support.
We don’t raise money through advertising of any kind because we believe it’s important to provide impartial information to patients.
Please consider donating just $3 to Not A Dry Eye Foundation this Thanksgiving via Paypal.
Or register on smile.amazon.com. Amazon will donate .5% of the purchase price every time you make a purchase (at no additional cost to you). Just select Not A Dry Eye Foundation as your preferred non-profit. It’s the same Amazon you always use, with the same prices.
Some of you have already made generous donations, and we’d like to thank you for your support. We receive messages all the time about how the information on this website is helping someone understand their condition. Your generous donation has made that possible.
There’s a scene in the 2016 movie Miracles from Heaven that’s probably all too familiar for some Dry Eye patients. When 5-year-old Anna Beam goes to the ER for the umpteenth time with stomach pains, the doctor says it’s acid reflux. Anna’s mother, frustrated to no end by what she knows to be yet another wrong diagnosis, demands that the doctor run more tests because she’s not leaving until she knows, for certain, what’s wrong with her daughter. It turns out not to be acid reflux at all.
Finding it Hard to Trust Your Doctor?
Medical research doesn’t always bet on the right horse, but medical research is what doctors rely on to inform the care they provide. Not that long ago eggs were the enemy. So was fat of any kind. Now we know that the decades-old study starting the trend that demonized fat was sponsored by, of all things, the Sugar Research Foundation (SRF).
singled out fat and cholesterol as the dietary causes of coronary heart disease (CHD) and downplayed evidence that sucrose consumption was also a risk factor. The SRF set the review’s objective, contributed articles for inclusion, and received drafts. The SRF’s funding and role was not disclosed. Together with other recent analyses of sugar industry documents, our findings suggest the industry sponsored a research program in the 1960s and 1970s that successfully cast doubt about the hazards of sucrose while promoting fat as the dietary culprit in CHD.
What does this say about studies funded by industries in other fields? Remember how the tobacco industry convinced doctors to prescribe cigarettes for anxiety in the 50’s and 60’s?
You can’t help but wonder about the results of studies sponsored by companies, and other stakeholders, that make the products they’re studying. Can we really believe there’s no conflict of interest? Can we know, for certain, that important data isn’t suppressed?
Finding it Hard to Trust Your Doctor
The Harvard sugar study isn’t the only example of medical research, and consequent medical care, that touts questionable, or outdated, facts. Regardless, these studies are what many doctors use to inform the care they provide. But when the studies aren’t good, or up to date, you might not get the care you need.
And then, bewildered, you might even end up finding it hard to trust your doctor, the way Anna’s mother did. It happens to Dry Eye patients all the time, especially to those of us who’ve gone from doctor to doctor to doctor, first just seeking care, and then later a “miracle.”
A Miracle for an Insurmountable Problem
But why does it have to get to that — seeking a miracle? Why does getting help for Dry Eye suddenly become an insurmountable problem?
We’re not really sure.
But maybe it’s because doctors aren’t experienced in treating Dry Eye and meibomian gland dysfunction as a unit, with a truly comprehensive approach to managing the signs and symptoms of these diseases.
Take for example the American Academy of Ophthalmology’s guidelines for these two conditions that often co-exist and overlap: Dry Eye and blepharitis. The academy publishes one Preferred Practice Pattern (PPP) for Dry Eye Syndrome and another PPP for blepharitis.
If a doctor refers to one, but not the other, the picture won’t be complete. It’s not that the guidelines are inaccurate per se (although they’re already out of date having been published in 2013 — a problem in itself). It’s that individually they’re not comprehensive enough to cover anything and everything that might be going on. One document just doesn’t go deep enough to describe all of the possible underlying or co-morbid conditions, and the latest effectivetreatments.
As a result, the care you receive could be inadequate. And so in addition to not feeling better after seeing who-knows-how-many doctors, you’re now finding it hard to trust your doctor, even a really good doctor, and maybe even the entire medical profession.
And that’s a fundamental problem. Because we need to trust our doctors, good doctors, who diagnose and treat us, so we don’t have to wait for miracles like little Anna Beam.
Should patients be given a voice or should patients just accept what they are told by their health care providers, pharmaceutical companies, medical device manufacturers, insurers, and others?
Giving Patients a Voice: Letter to TFOS DEWS II
Not that long ago, patients were expected to listen to their doctors and accept what they were being told at face value. It was believed that if patients knew too much about their own bodies, and the health care they received, they might become anxious or agitated in ways that wouldn’t be beneficial to them.
These days, patients act more like customers who know what they want. With out-of-pocket health care costs rising into the tens of thousands of dollars for some every year, it’s no wonder.
So why wouldn’t every health care provider, every pharmaceutical company, every medical device manufacturer, and every insurer, choose to listen to their patients, a.k.a. customers?
What Matters to People Seeking Health Care
This year the National Academy of Medicine gave its Gustav O. Lienhard Award to David Cella, PhD, of Northwestern University Feinberg School of Medicine “for his pioneering work to measure and apply patient-reported outcomes in health care.”
This is why NAM presented the award to Dr. Cella.
“Dr. Cella’s trailblazing work in investigating what matters to people seeking health care has paved the way for a better, more patient-centered approach,” said NAM President Victor J. Dzau.
During his career, Dr. Cella has made transformational contributions toward understanding what aspects of life matter most to people struggling with health conditions and measuring those aspects so that the information can be used to guide care. In 1985, he conducted in-depth interviews with cancer patients in order to develop questionnaires that could shed light on how cancer therapeutics were affecting patients’ lives, at a time when it was uncommon in oncology to ask patients how they were feeling. His efforts helped usher in an era in which it is common practice to include patient stakeholders both in the development of quality-of-life questionnaires and in the more general conduct of research and clinical care.
Whether or not the “common practice to include patient stakeholders” has been adopted by all health care providers, including those who treat Dry Eye patients, remains to be seen.
In the Spirit of Patient Participation
In the spirit of patient participation, we contacted the Tear Film and Ocular Surface Society (TFOS) earlier this year when we learned that TFOS, the organization behind the Dry Eye Workshop (DEWS) and The International Workshop on Meibomian Gland Dysfunction, would be convening DEWS II to:
update the definition, classification and diagnosis of dry eye disease, critically assess the etiology, mechanism, distribution and global impact of this disorder, and address its management and therapy.
Given that nearly a decade had passed since the first DEWS papers — which we regard highly and often cite on this website — were published, we supported the effort wholeheartedly.
After contacting TFOS via e-mail, and offering to participate to ensure that the “patient perspective” would be included in committee meetings and publications, thereby giving patients a voice, our offer was declined. We were told that committee members had already been selected and that there were already many patients among them.
We admit that we had missed the deadline to submit candidates for participation. That’s absolutely true.
But when we reviewed the list of committee members, we found only two patients per se. The “many” others? Well, we can assume, based on estimates of the incidents of Dry Eye, that some of the committee members have some form of the disease, though we just couldn’t figure out which ones they are.
Giving Patients a Voice
So we decided to write a letter offering the Dry Eye patient perspective to all of the DEWS II committee members. The letter was e-mailed in July to over 100 committee members and copied to dozens of other stakeholders and the media.
So share our letter. Download and forward it as many times as you like. Circulate it and discuss it. Post it on Facebook and talk about it on Twitter. Tell your doctors about it and even your government representatives. Send it to your local newspapers and favorite magazines. Share it with you family and friends.
