Chronic Dry Eye Patient Spotlight: Barby
Barby shares her experience getting diagnosed with chronic dry eye (CDE) and what she wishes others knew.
I developed chronic dry eye secondary to reflex sympathetic dystrophy, also known as central pain syndrome. I have had trouble with my vision and have worn glasses most of my life, and contacts rarely since high school. However, after developing the neuroautoimmune condition RSD at 29, my eyes changed. It became harder to clear my eyes and harder to cry.
My eyes get dry and painful; sometimes it feels like grains of sand are cutting them. At first, my primary care doctor, neurologists, and pain doctors ignored the symptoms. They had much bigger health challenges to focus on with me. Most eye doctors I saw would acknowledge that I was telling them my eyes changed but did not offer me much advice or answers.
Feeling heard for the first time
Finally, after a few years of me "complaining," I was given a comprehensive eye exam. I felt heard for the first time when it came to my eye issues. The doctor took note of my complete health history. She did a strip test to measure the tear production, and I finally felt heard when she diagnosed it.
During the strip test, she placed a paper strip under my lower eyelids for about 5 to 6 minutes and then took a measurement of the tears. A few years later, it was confirmed by a leading expert on RSD that this is a common secondary symptom, and it was no surprise to him that I was dealing with the symptoms.
The hardest part of chronic dry eye
The most difficult part of living with dry eyes is that it affects my daily living activities such as reading and focusing on the item I am trying to read. If I put in eye drops, it blurs the page for a few minutes and runs down my face. When I do not put drops in, they get red, painful, and irritated, which also makes my vision more blurry.
Some of the symptoms I have are classic and include a constant burning sensation. I constantly feel the need to wipe away something in my eye. I am extremely sensitive to light and cannot wear my contacts for long periods. I get eye fatigue and have difficulty with nighttime driving. In addition, it is common for me to wake up with mucus in or around my eyes. I also find it difficult to cry with actual tears.
I look fine in glasses, which helps not just with vision, but also keeping particles out of my eyes as well. I have tried prescription eye drops but actually prefer to just use saline for sensitive eyes.
Talking to others about my dry eye
Most people I talk to say they understand. My other friends with RSD, lupus, and other chronic conditions get it and understand. However, others do not really get it. I remember at my mom’s funeral, one of her friends came up to me and said, “It’s okay to cry. God will catch your tears and make everything okay.” I did not think it was the time or place to explain that it is just harder for me to form actual tears.
I "cry," but I just do not have flowing tears down my face. Her comments have stuck with me. How and when do you explain something that makes little sense to the average person?
What I wish others knew
I wish other people knew that automatic body processes like being able to create tears are not always easy or possible for everyone. Do not jump to conclusions or expect others to have the same reaction to a situation as you, because we all do not work the same. For some it is dry eyes, for some it could be swallowing or processing food.
There are many invisible challenges that if you know what to look for, you can see it. It is not just fixed, and it does affect the person to go through "invisible" challenges like these.
Have you taken the 2023 Chronic Dry Eye In America survey?