How I Try to Get Others to Understand the Struggles of Chronic Dry Eye
Last updated: April 2023
No one really sees the daily struggles I go through with chronic dry eye on a day-to-day basis. They don’t see the number of times I put in drops, or how often I need to rest because I just can’t continue with my daily activities. No one sees that I go to bed early sometimes, because my eyes are too sore for me to keep open.
But when other people are around, the reality of living with chronic dry eye is on show for all to see. At those times I need to help them understand the struggle of this condition.
When out at a café or restaurant with friends, I’m always particular about where I sit. Others might think I’m being fussy or difficult. The reality is that I can’t sit in the flow of the air-conditioning or heating as it hurts my eyes. I have to choose my table, and my seat at the table, very carefully. Facing a window is also very uncomfortable if the light is bright outside. Explaining this struggle to my friends is necessary, otherwise I look like I’m being a bit of a prima donna.
I have been known to ask the establishment to turn off the air-conditioning if the day isn’t too hot for this to bother others. Sometimes I ask them to turn down the music while they’re at it, and no doubt I have occasionally been considered the “customer from hell.”
Similar issues are experienced at work when I do my volunteer radio shift from a small broadcasting studio. I try to get in first before the other announcer. Then I set the air-conditioning to a suitable low strength. Sometimes I even turn it off. One time he was complaining about the contraption malfunctioning, and he said it usually worked well. I had to admit that I had turned it off and explain why.
After he understood my struggle with chronic dry eyes, he was quite accommodating. We managed to find some middle ground on the climate control in the studio that suited us both.
You would think that I could be mistress of my own domain at home, but that’s not always the case. No matter which way I adjust the heating/cooling fans, they seem to blow air right onto my face when I’m watching television. I’m still waiting for a strong person to appear to help me move my sofa back a bit to get me out of the breeze. In the meantime, I anxiously anticipate that in-between period in the weather when neither heating nor cooling is required.
With my grandchildren
When my grandchildren are staying with me, they have occasionally caught me wearing sunglasses while watching television. That has necessitated explanations of the realities of chronic dry eye. They have had many reminders from me to wear their sunnies outside, but they wondered if I’d gone a bit bonkers when they saw me wearing them inside.
Sometimes these grandkids hear my microwave going early in the morning. The younger one wakes up and races out to the kitchen anticipating something nice to eat. "No, it’s not breakfast," I have to tell him. "It’s just your grandmother heating up her eye mask." The other grandchild is a teenager and is oblivious to this morning mask-heating. Teenagers don’t tend to race out anywhere in the morning if they can help it!
They're starting to understand
Friends, family, and workmates are slowly but surely realizing what a struggle it is to cope with chronic dry eye. They are finally understanding that so much more is involved than "just put some drops in."
And now I’m off to bed because my eyes are so sore I can’t continue to write, and no amount of drops will help me tonight.
Has having dry eye helped you better advocate for yourself?