Probably the most difficult part of dealing with my condition is feeling abandoned by doctors.
It began with my first visit to Urgent Care with terrible pain in my eyes. I was examined and sent home after being told, “It’s only dry eyes.”
Eventually, I was given a referral to a corneal specialist. I was so hopeful I’d get some relief. But instead, he told me, “Your condition is incurable, and you’ll have to learn to manage it. Continue with hot compresses, eyelid wipes and use Restasis eye drops twice a day.”
As I left that appointment, the pain in my eyes felt overwhelming. I wore sunglasses and tears were streaming down my face. The irony of tears and dry eyes didn’t escape me. I openly sobbed once I was inside my car.
On my last post, I shared the sad feelings expressed by “H” – a young girl who was suffering and lonely. She finally went to see a new doctor.
She posted below:
“H:” Is there anybody who has normal Schirmer results but still has so much dryness? My doctor told me that I don’t have dry eyes. She said my results were normal and that I don’t have Blepharitis either.
But I have terrible irritation and my eyes really have pain. When I cry or put drops in I feel better. She said to stop searching for dry eye treatment and to get psychological help. But I really suffer; she doesn’t understand. I don’t know what to do …something is affecting my eyes too, but the doctor cannot find it.
“M:” Go to another doctor and see if they confirm those results, without sharing that you’ve already been to see another doctor.
“H:” Ok. I will do this. But doctors can’t see my dryness. I don’t believe them.
“M:” Me neither, the only thing I get is drops. I have not met one yet that knows about dry eye treatment. The U.S. seems to have some doctors that can help their patients. I’ve struggled to help myself.
“H:” Yes, I am tired of struggling.
“M:” Please don’t give up. It’s definitely a struggle and I know how you feel. I used to cry after seeing the doctor, I felt hopeless, but over time it has gotten better.
”H:” I won’t be able to do my job or anything because of eyes. My eyes never heal.
“M:” Try not to think too far ahead because that brings stress and makes things worse, I know I’ve been there. It took me a long time to improve but I still get bad days. Stress is the worst thing for us.
”H:” Yes but I can’t prevent stress because of my eyes. I’ve seen so many doctors and they can’t find anything. The first one said, “You have dryness; you must have plugs.” Another one said, “You have MGD, and there is no cure.” The last one said, “You don’t have dryness.”
According to doctors I shouldn’t be suffering, but I am!
“B:” Go to another doctor, get plugs – maybe they’ll do gland expression. My own tears are also irritating because the oil glands don’t work. Hot packs are a little help; mostly they are relaxing. Never let a doctor tell you it’s all in your head.
”H:” There is no gland expression here. I can just do hot compresses at home.
”L:” You might try to get psychological; I know it has helped many other people.
“A:” It sounds like neuropathic pain, which ABSOLUTELY is related to dry eye.
“H:” What can I do for neuropathic pain? I really suffer from it!
Writing this blog put me in a place of looking back at all of my doctor visits related to my dry eye condition. I sorted through every office visit summary and copied whatever diagnosis was there:
BILATERAL UPPER AND LOWER EYELID BLEPHARITIS
DRY EYE SYNDROME, BOTH EYES – Primary
OCULAR PAIN, BOTH EYES – PRIMARY
VITREOUS OPACTIY, BOTH EYES
DEGENERATIVE MYOPIA, BOTH EYES
POSTERIOUR VITREOUS DETACHMENT, BOTH EYES – Primary
BLEPHARITIS (INFLAMED EYELID)
VISION DISORDER – Primary
Not one of them mentioned MGD.
Meibomian gland dysfunction (MGD) is one of the most common diseases observed in clinics; it influences a great number of people, and is the leading cause of evaporative dry eye.
The more that I read about dry eyes, the more convinced I became that I had MGD. This became a new road for me to follow.
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