My vision fades out…and I can no longer read. I see the faint outline of words but the pain is so excruciating…like razor blades against my eyes. I hold my breath, waiting for the pain to subside, even a little. I want to SCREAM out. But I can’t. I know they won’t understand, and I know it won’t go away completely, probably not ever. You would think that after six months of dealing with this, I would be used to it. But I’m not. There are no words to describe pain like this.
I am only 21 and I have an extremely painful disease called corneal neuralgia. You will not find it in medical dictionaries. In fact, doctors don’t even know it exists. They diagnose and treat eye pain based on what they observe. With corneal neuralgia, there is often nothing for them to see because the source of the pain, malfunctioning nerves of the pain system, is hidden. They can only be detected with a special costly microscope that few doctors have access to.
Up until then I thought that I knew the meaning of pain. We all experience it at some point in our lives. But that of corneal neuralgia is much different. I cannot find the words that describe the magnitude of pain that I endure.
It started with my eyes feeling a bit scratchy, which I thought nothing of it until it became progressively worse. With time, I found myself waking up with the feeling of razors cutting across my eyes, struggled through the day in relentless pain and fall asleep in pain. I can’t escape it. I tried so hard to be proactive. I went to ophthalmologists and did everything they suggested. I tried about 18 different eye drops and used warm compresses. The drops only made it worse. Nothing helped.
This was a battle I was losing. Months passed and the co-pays and the cost of over the counter and prescription eye drops was adding up, and I didn’t have even the slightest bit of relief. As a college student with 2 part time jobs, I often found myself having to choose between the costs of my medical care and eating dinner.
I thought that if private practice ophthalmologists couldn’t help me that maybe the famous ones who work in academic centers would be familiar with this disease. I was wrong. They explained without the slightest hint of compassion that in order to have eye pain something had to be physically or structurally wrong with my eyes. Pain like I describe could not exist without a cause. And they couldn’t find one.
After a few visits the nurse refused to schedule more. “We did the tests. You need to get over yourself and realize that nothing is wrong with your eyes. I’m sorry but we cannot help you”. She told me over the phone. Get over myself? Her tone was cold.
I had hit a brick wall. The pain was so intense I didn’t want to move, I didn’t want to have eyes. At times I began blaming myself. Was I crazy? If it was all in my head, then why couldn’t I get it to go away? Why didn’t it ever ease up? By now the eye pain was completely unbearable. I didn’t even want to wake up each morning. I couldn’t study. At times it was so bad that I wanted to vomit. I tried to spend as much time sleeping, the only time I was not in agony.
I had a lot going for me. I worked hard and I was proud of myself. I had excelled through college and was accepted to graduate school in the fall. The last thing I wanted to do was take my own life but I thought suicide would be the only way I could escape the pain. Many thoughts kept passing through my mind. Why me? Was I being punished? Why now? Why my senior year of college? And then there were the other questions that plagued me at night. Am I crazy? What will happen to me if the pain never goes away?
Then I heard of the work of Dr. Rosenthal and his nonprofit Boston EyePain Foundation that existed only to help people with corneal neuralgia. He listened to my story and for the first time I felt that someone really understood. Dr. Rosenthal told me that I wasn’t alone; that he had seen many patients like me. Just his assuring me that the pain was real had a profound impact. There was even proof this disease existed. I wasn’t crazy! I felt hope again.
Unfortunately, I now know that it is one thing to have a diagnosis and another thing to find a doctor able to treat a disease that isn’t known to exist. Thoe few doctors who believe that my pain is real are faced with the challenge of how to treat it. I cannot travel to Boston and unfortunately, Dr. Rosenthal is no longer treating patients. Although drugs can take the edge off the pain, its side effects are intolerable.
There is no way to tell for sure how many people have this disease, but there is a whole group of people out there being missed by health professionals, just like I was. They need to be heard. They need to be validated, treated, and managed just like those with other diseases.
Dr. Rosenthal has made it his mission to make our cries heard. He has given me and many other victims of corneal neuralgia hope that this disease will become recognized by mainstream doctors and motivate researchers to develop treatments for me and my many fellow sufferers—before it is too late.
By Alicia Healy