Writing with Chronic Pain

I want to tell you a story, one that I tend to vaguely mention in posts with phrases like, “I have eye trouble,” or “I’m light sensitive.” Over the years I’ve stopped talking about it as much because I haven’t wanted to bother/bore people (and it’s just kind of a daily thing for me now), but I’m starting to realize when you don’t discuss chronic pain, people don’t realize the seriousness of the issue. And that while some things you do to alleviate pain may seem funny, it’s really not a laughing matter.

About seven years ago, something changed with my vision. It started with an ocular migraine. One moment I was fine, the next, my vision started to pixelate. A strange line appeared across my eye and kept pulsing so quickly I started to lose my vision. It got so bad that about 75% of my vision went out, and I had to grab onto walks just to walk around at work.

I thought I was having a heart attack.

Ocular migraines can last anywhere from moments to 30 minutes, and I’m on the longer spectrum. I’ve gotten them while driving, working, and writing. It used to terrify me every time it happened. Now? I’m just kind of used to getting them and just wait it out as best I can and hope that it doesn’t spark a full-on migraine.

About a month later, things got worse. My eyes had been wearing out faster than usual and I wasn’t sure why. Then one night, while I was looking at my computer, my vision completely doubled.

Ever since then, I’ve battled with pain in my eyes.

For seven years.

At the worst times, it feels like someone is shoving their fingers into my eyes and shining a bright light that I can’t look away from. My forehead is stuck in a vice. A certain level of light can start up the issue and then something as simple as looking at a computer or reading a book takes a painful toll on my eyes.

I’ve been to eye doctors and ophthalmologists. I went to the Mayo clinic. I tried medicines that have made me suicidal or caused insomnia. I’ve been told not to bother coming back because a doctor didn’t believe me. I’ve used prisms and been falsely diagnosed with lazy eye. I’ve tried eye drop after eye drop, changed glasses, had plugs inserted in my tear ducts, taken antibiotics for inflammation, etc.

The most anyone can tell me is I have severe dry eye, light sensitivity, and I used to have blepharitis, an inflammation of the eyelids. But even with all the treatments, and with my eyes as healthy as they’ve ever been, the pain is still there. I’m at least to the point that I don’t wake up in the morning and fear that I won’t have the eye strength to do work. But I don’t know how I’ll be in the evening when I want to write.

I live in perpetual darkness. The most light I might have on at my house in the evening is blue Christmas lights, or a single lamp, because more light than that is painful. And believe me, using full-spectrum lights for depression are NOT fun (though at least they help my mood).

To top it off, I also have chronic migraines. I take a medicine three times a day to keep them under control, but when they hit, they can be debilitating. And unfortunately, my eyes are the first to go down. I’ve thrown up because the pain was so bad. I’ve had to lay in complete darkness with cold cloths over my eyes and on my neck to stop the pulsing pain radiating through my skull and eyes. And there’s no telling how long the migraines will last. It could be a day. It could last several. If my eyes become even more sensitive to light, that’s generally my first sign a migraine is coming on.

I’ve had to fight tooth and nail at work to be placed in a darker location so I can actually perform my job. And I still have to wear a hat to block out what light comes near me because otherwise my eyes spasm and start to hurt. Sometimes I even have to wear sunglasses or put a shawl over my head to drown out the light. And you know, it gets tiring when people crack jokes about it. I see the looks people give me when they walk by and I’m wearing a hat inside or donning a pair of glasses so I can finish my work. I hear the snickers or snide remarks when I have my computer settings so low or use a blue background when writing so I can actually do something I love. I also hear the whole, “It’s just a headache,” comment or the scoffing, “WOW, you really are light sensitive, aren’t you?”

And it sucks. Because what people don’t realize is it also affects the things that I love most which are writing and reading. When I say that it takes me awhile to get through a book, it’s because it physically hurts to read for long periods of time. There are nights I want to write pages of my story, but if my eyes are having an issue, that goes out the window. I used to be over the moon when my favorite authors would come out with big books. Now I just dread seeing them because I know how much time and eye strain it’s going to take to get through the story. Yes, I know I can listen to audio books, but for me, it’s not the same. I can’t look at the text and visualize things as easily with audio books as I can while reading and holding books. Of course, that doesn’t mean I won’t use audio books. I have quite the library stacked up.

Reading used to be my stress reliever, and now I have to really work if I want to get through a story. And when it comes to editing my own stuff? It can be an absolute nightmare. I’ve had tears screaming down my cheeks trying to edit my writing because it hurt to read, but I needed to get my deadlines done. Even now while I’m writing this post I can feel my eyes watering and I’m closing them periodically to give them some rest. And it’s not just from staring at screens. It’s while I’m hanging out with people. Grabbing tea at a coffee shop. Gardening. Cleaning. Shopping at the store.

It’s always there.

I’m not writing all this to have people feel sorry for me, or to whine, that’s not the point. I just want people to understand that I do things like wearing sun glasses and hats or rarely pick up books these days not because I want to, but because of chronic pain. It’s not always visible, and believe me, eye problems and migraines have definitely caused my anxiety and depression to escalate.

I’m grateful the eye doctor I have now wasn’t like the others who told me not to come back. She stuck with me and has made things bearable for me. And we’re still hopeful that things will continue to improve over time.

So be kind to people who have invisible issues. You never know what’s going on behind their exterior wall.

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