By Chelsea Rice, as told to Haley Levine
I learned I had diabetic retinopathy in 2004. Unfortunately, my diagnosis came a bit late, and I lost most of the vision in my right eye. Today, when I do advocacy work, I stress the importance of keeping up with your eye exams. It can save your eyesight, literally. This is what I want others with diabetic retinopathy to know.
Don’t blame yourself.
When I was diagnosed, I had a lot of self-loathing. I noticed the symptoms months ago, when I bent down to pick up something and noticed black jellyfish-like streaks falling over my left eye. I went to a local eyeglass store for an eye exam from an optometrist, who told me I needed to see a retina specialist.
Unfortunately, I didn’t have health insurance at the time, so I put it off. In the end, my symptoms got so bad that I had no other choice. You needed a vitrectomy, a surgical procedure in which the surgeon makes a small incision in your eye to drain blood from the middle of the eye and remove the scar tissue that’s pulling in the retina. A year later, I had to do the same procedure on my right eye, but it was too late. My retina has completely detached and I have lost most of my sight.
I blame myself, which seems ridiculous now. It wasn’t my fault that I couldn’t afford my medical care. But for those first few years after eye surgeries, I lived in fear of this happening again. If I lost vision in my left eye, I would be pretty much blind. It is almost impossible to withstand this pressure. You cannot live your life on pins and needles. I had to learn to move on. One of the ways I did it was to start taking diabetes more seriously than I had in years past. I knew that if my blood sugar was better controlled, I would have a lower risk of other health complications, including vision loss.
You can still live your life.
Fortunately, I can continue to do most of my daily activities, with some modifications. While I can no longer read with my right eye, my eyesight is still good enough to be able to drive and go to my day job at a credit union. My left eye is 20/20, but my right eye only has about 10% of its vision. This means that when I look at something on my right, it’s so blurry, that it’s like looking through a distorting mirror. There are also large patches of dark spots. I try not to put myself in situations where I have to drive at night, and when I do, I drive over and over during daylight hours so I know exactly where I’m going.
It took me a while to get around the fact that I have a disability and therefore am entitled to some work-related accommodations through the Americans with Disabilities Act. I’ve been upfront with my employers about my vision, and my current job has made a great deal of adjustments – eg, a large screen for my computer so I can zoom in on my work.
A few months ago, I had a corneal abrasion in my left eye. This occurs when the layer of cells on the surface of the cornea relaxes. It is very painful and can make your vision very blurry. My symptoms have always been worse in the morning, so I haven’t been able to work for a few hours. But since it’s diabetes, I just filled out certain forms for my employer and it didn’t count against me. Don’t be afraid to ask for these facilities. It is your legal right to have it.
It helps to be open.
I’m a comedian, and for a long time I wrestled with how much I tell my audience about both diabetes and diabetic retinopathy. But a few years ago, I watched another comedian with cancer talking about his illness on stage. He later told me that it was my responsibility to talk about my diabetes and see me because you never knew who you would get to. he is right. After my shows, people will come up to me and tell me their personal stories as well.
It helps alleviate some embarrassing moments, too. Like the time in the middle of my work, I walked near the edge of the stage and almost fell. It was only about 8 inches in diameter, but when you’re almost blind in one eye, it’s really scary! I also always try to play some kind of diabetes joke into my business. I even joked about retina surgeries. It’s a way to educate people about diabetic retinopathy without them even realizing it.
Get that annual eye exam!
When you have diabetes, you should stay on top of all of your medical care. She visits an endocrinologist every 3 months, a dentist at least twice a year, and a podiatrist and eye specialist at least once a year. Otherwise, small problems can quickly become big problems.
You also need to pay close attention to what is happening with your eyes. People with diabetic retinopathy often see dark spots or floaters in their field of vision. I know all my floats very well. But if I see something new, I pay close attention. If it doesn’t leave after a couple of days, I see an eye doctor. After two fears of surgery, I won’t take any more chances.
And remember, if you ever feel the need to pressure yourself about your vision, remind yourself: You didn’t, diabetes did. Every morning, I get up, get out of bed, give myself time to clear my vision, and enjoy another day. That’s all we diabetics can do. We need to face all our challenges head-on and commit to staying healthy.
Be aware of your body – including changes in your vision – and then get out there and live your life better. I still chatted about the idea of riding a motorcycle, for example. I’ve seen people with eye patches ride it, so why not? I might not be able to ride cross country on a Harley, but I can at least take a ride around town. Everything is possible. Don’t let diabetic retinopathy hold you back.
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