Hannah Lee’s Story
It started a little over two years ago when I was 26 years old – slight burning in both eyes that rapidly became more intense and was soon joined by crippling, stabbing pain that shocked me to my very core. The agony was so unbearable that there were times I wanted to gouge my eyes out. Since then I’ve seen over a dozen ophthalmologists, several primary care doctors and have been to emergency clinics. While some doctors were simply puzzled, others were abrupt and implied that since they could see no physical signs for the pain I described, it couldn’t be real.
The first time I encountered that devastating skepticism in the midst of experiencing this mind-numbing pain, I was stunned. I felt that I was living in a nightmare in which I was doubled up in pain so horrific that I didn’t know how I could continue and the doctors who I looked to for help didn’t believe that my suffering was real. The pain made it impossible to work and as my savings diminished, I panicked about my future.
I have seen expensive eye specialists. I have tried many treatments including nearly every eye drop on the market, antibiotic ointments, heat pads, serum tears made with my own blood, pain killers including Gabapentin, Cymbalta, Vicodin and Valium, sessions of acupuncture, sinus medications, cutting various foods out to see if it makes a difference, Restasis, and two rounds of antibiotics. Nothing helped. I knew that dry eye was not adequate to explain what I had both due to the degree of pain – it is severe and constant – and when the pain spread to my teeth as well.
One day I was lucky enough to stumble across a blog post that mentioned Dr. Rosenthal’s work. It was my first encounter with the words “corneal neuralgia.” My pain finally felt legitimized and I started reading about other people’s experiences. It is bittersweet in that I hate knowing others are experiencing this too but it is reassuring to know that I am not alone. Even though I haven’t met a fellow sufferer in person I am acutely aware of the fact that we are fighting the same battle and am grateful to everyone who has ever shared their story.
Alongside the challenge of fighting to live through another day I have become aware of the additional unspoken burden that those with an invisible illness face. I have been so frustrated by the false premise that so many healthcare professionals accept without examination; that medical knowledge has reached its peak and therefore anything that falls outside of its current scope is classified as psychological. I have encountered my share of this phenomenon but I’ve also read of many accounts of others whose pain was dismissed or trivialized. The truly terrifying aspect of this disease is that there are no physical markers to indicate the very real level of pain one is in.
I understand the whole mind body connection and I try to minimize stress and incorporate positive thoughts as much as possible for someone in my circumstances without divorcing myself from reality. But I find it insulting whenever anyone implies that people in chronic pain cannot distinguish between psychological and physical pain, when to me they are as distinct as the moon and the sun. Several times within the past month I have woken up in excruciating pain – jolted awake from sleep, in a fetal position where all I can do is count the minutes and hours until I can regain my basic functions again.
It made a world of a difference to be told by Dr. Rosenthal the following words, “Your pain is real and I know how much you are suffering.” A few simple words that give me hope. It’s one thing to have your pain validated by others afflicted with the same disease who are going through the same thing. But to have a doctor really *get it* gives a kind of relief that can’t be adequately expressed in words. Meanwhile, life for me has been reduced to a waiting game where every moment is filled with pain – a notion that is dumbfounding but unfortunately very palpable to me. And I struggle to keep waiting for a cure or anything that can reduce the degree of pain. The sooner this disease is legitimized, the sooner that can happen.