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.
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.
If you are having suicidal thoughts, contact a local suicide prevention hotline immediately.
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.
Send your questions and comments to blogger@notadryeye.org.
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