Frustrations Navigating the Medical Maze
Dear Doctor, My Eyes Hurt: Trying to Figure Out My Mystery Illness
Here is how I cope with my new lifetime of problems.
Editorial note: this story has an eye image that might disturb some readers.
My Condition Started With a Full Body Illness
It was September 2013. I suddenly could not stand. My head hurt. I became unusually fatigued. I was hacking incessantly with a productive cough. I had hot and cold flashes. I didn’t have enough strength to get out of bed. I thought it was the flu or a bad cold, and it would go away.
Two days later, my symptoms had become so bad that I did something I was loathe to do. I went to the doctor. I went to a doc-in-the-box, as they would be able to see me faster than my primary care doctor. They said I had a cold, prescribed cough medicine, and suggested that I stay in bed.
The following week, I saw my regular doctor, who prescribed me an inhaler as my breathing had become labored. He also prescribed me an antibiotic.
All day, every day, I was blowing prodigious amounts of mucus, going through multiple boxes of Kleenex, hacking until my lungs hurt, and I was able to do little else but stay in bed. I was too weak to pick up the tissues littering the floor. I blew and threw.
After ten more days, I was no better, so my doctor prescribed me a different antibiotic and ordered extensive bloodwork, which all came back normal.
After three weeks, my symptoms started to abate. I had a little more energy, and although my breathing remained labored and I still had chest pain, I was finally able to drive to work, although I could only be there for a few hours.
My Medical Problems Resume
A month later, all the symptoms came back with a vengeance. I called my doctor, who put me on a third antibiotic, which failed like the others. My symptoms were inconsistent with a common cold but not far from the flu, so I wasn’t yet panicked.
My body alternated between sweating profusely and shivering. I was constantly turning the air conditioning and heat on and off, but it didn’t help. I developed several red, lumpy growths in the back of my throat.
I saw my doctor again. He didn’t know what the growths were or why I was having any of the other symptoms. He ordered more bloodwork, and all came back to normal. He was stumped.
After another week, when I woke up, my eyes were hurting badly. By the next day, I was experiencing severe pain. A ten out of ten. I called my doctor, and he told me to go to an ophthalmologist immediately, which I did.
By that time, the conjunctiva, the whites of my eyes, were red. Red red. When I arrived at the ophthalmologist, his assistant put drops in my eyes while I was waiting for my emergency appointment.
These drops were so painful I screamed in front of a room of patients. It struck me as odd that the assistant gave me the drops while I was in the waiting room and not in the examination room.
When the doctor finally examined my eyes, he shook his head. He was silent as he jotted down notes. He said nothing. I waited. I finally asked if I had conjunctivitis.
He said yes, and he handed me a prescription for Vigamox, eyedrops commonly prescribed for eye infections. He told me to schedule a follow-up appointment.
That day, my eyes became even worse. I developed a light sensitivity so severe that I had to keep my eyes closed tightly underneath a pair of sunglasses. Any light caused the shooting, stabbing, and unbearable eye pain.
My friend/husband-to-be, Pete, drove me to the hospital, where there was a wheelchair waiting at the elevators of the parking garage.
Arriving at the Emergency Room
I couldn’t open my eyes. I was in excruciating pain. Pete wheeled me next to a bank of elevators while he searched for a parking space. I was scared. It was freezing cold, as it was an open-air garage. I heard a disembodied voice say something, and I asked whether I was indoors or outdoors. Outdoors.
I sat shivering in the dark, and after what seemed like thirty minutes, my friend came back to wheel me into the elevator, apologizing for the wait. Parking at that hospital is not easy.
Pete provided the emergency room personnel with most of my information, and I remember sitting, rocking back and forth, telling myself, “It’s only pain. Pain can’t hurt me”, over and over like a mantra.
By the time I was called into the exam room, it was about midnight. I was seen by one of the residents who looked like he was fifteen. After examining my eyes, he said that he had never seen anything like it before. He didn’t elaborate, and I was in too much pain to bother asking. He told me to come back eight hours later when the rest of the staff would be there. It was a long eight hours.
When I came back, I was led by the arm to an exam room. I still couldn’t open my eyes, but from the voices, I became aware that the room was entirely filled with people. I was in too much pain to ask who they were and why they were there. I had previously worked in a teaching hospital, so I figured they were medical students. But why were there so many of them?
Surgical Procedure (Debriding)
The doctor finally introduced herself, examined my eyes, and addressed the crowd, pointing out something that I later learned was a projection on their iPads of my eyes, and I heard one of the students say excitedly, “Impressive!”
The doctor spoke to me in soothing tones and said she was going to do a procedure but didn’t give any details, and I was too freaked out to ask. Whatever needed to happen, I thought, just make it happen. She put some drops in my eyes that stung badly and told me to keep my eyes as wide open as possible. A device was inserted into each eye that pulled the eyelids open.
Images of the parallel scene in A Clockwork Orange flitted through my mind. For each eye, I was able to make out some sort of device scraping them, like a little scalpel. She reassured me, “You’re doing great,” which made me wonder, how was I doing great? What was she doing? Why was she spending so much time on each eye?
She told me to look up, down, left, right, diagonally left, diagonally right, diagonally up, diagonally down, and for each position, she did something to my eyes. I figured she had everything under control.
I was previously able to force my eyes open by pulling on the lids, although I chose not to because of the severe pain and photosensitivity. But when the procedure was over, I was unable to do even that. They bandaged both eyelids shut with a vertical strip of tape.
The doctor left the room, and the resident told me to come back later that day. It didn’t occur to me to ask what had just happened or what I should expect in the aftermath. I was exhausted from not having slept, and my nose kept running, so I relied entirely on Pete for everything. He chauffeured me home for a few brief hours, then brought me back.
Once again, the large room was full of students, and the doctor pulled off the tape and examined my eyes. My memory becomes fuzzy at this point, and I would have to rely on the medical records to find out what happened. I do know she gave us a couple of prescriptions, and we were told to go to the hospital pharmacy, not the CVS that I normally use.
Navigating the Hospital
The hospital was so huge it had a train that went from one end to another. The place was a horrific maze. It was freezing cold, and I remember sitting in that wheelchair, completely blind, waiting for the right train to take us to the pharmacy, feeling the whoosh of trains coming by.
When we reached the pharmacy, they took their sweet time filling my prescriptions. They said they were an out-of-network provider, and I would have to pay a huge amount of money out of pocket. Whatever.
None of my medications were for pain, only Vigamox drops and eye ointment for the infection. Pete took me straight home, and I fell asleep right away despite the pain, as I hadn’t slept in 2 days. Pete had to get back to work, so he left me in my house.
I woke up after a few hours hungry and needing to pee. I gingerly got out of bed, reaching both of my arms all the way out so I could feel my way to the bathroom. I missed the toilet and could hear my stream landing on the tile floor. I sat down and cried.
Confusion from Multiple Misdiagnosis
I had misplaced faith that whatever was causing this had a name or a cause. Is that too much to ask? Apparently, it was.
No one could tell me why it was happening, what it was, or when it might stop. Some of my various ophthalmologists/eye specialists offered “official” diagnoses that went into my medical records, but no two were the same.
As a result, I was diagnosed with around twelve different conditions. They also offered various and contradictory theories about what had happened to start the issues and why my symptoms weren’t abating.
One finally told me that I shouldn’t expect my eyes to get better, that I should proceed with my life accepting it would be a chronic, permanent, and painful medical problem (she used the term “discomforting”).
It also permanently changed the appearance of my eyes and eyelids. As a result, I completely lost faith in the medical system. I felt abandoned, fearful, and angry. But I still keep my hope.
Conclusions: How I Now Cope with My Condition
So that’s what I did. Accepting that this is my new life and giving the kissoff to the old one is a long process, one that I struggle with some days more than others. But, in trying to find something positive out of all this, I find it is vitally important not to lose hope.
I started regularly praying to a god I didn’t believe existed, and surprisingly, it helped me feel better. Sometimes, only a little, but when you’re in that condition, you’ll take what you can get and be grateful for it.
I joined an online support group where I can complain all I want and receive nothing but empathy and encouragement.
Sometimes, we just have to change what we hope for. When my doctors told me to expect my condition to remain indefinitely, I had to change my prayers or focus to ask for acceptance and a better way of coping day-to-day rather than a cure that would never come.
Even though it initially felt like it was the end of my world, and in my weak moments, it still does; I was able to adapt enough to have some meaning in my life that wasn’t defined by a part of my body.
I encourage anyone who is suffering from a medical illness (which often translates into exacerbation of an already-existing mental one, as it did with me) not to lose hope. It’s our responsibility to make meaning of our lives, no matter what our bodies do to us.
