I Got Diabetic Retinopathy - So Now What?

One patients experience with a difficult diagnosis

By A.Paul Chous, MA, OD, FAAO

One of the most fearful moments in my life came the day my eye doctor told me I had the beginning stages of diabetic retinopathy. I had heard that diabetes was a major cause of blindness, especially in people who had been diagnosed with diabetes for a long time. Still, I was not prepared for the news, as my vision on the eye chart was perfect as long as I wore my glasses. Utter denial caused the words of my optometrist to go in one ear and out the other until, almost a year later, my older brother (a fourth year graduate student in optometry school) insisted that I see a retinal specialist before leaving town to start a Masters program in Berkeley. The specialist examined and took pictures of my eyes, furiously wrote in my chart, called his nurse in to the room, then solemnly told me that I had "severe, vision threatening diabetic retinopathy" requiring immediate laser treatment to "lower" my risk of blindness. "Holy c*#p!" I thought, "How can this be happening to me? I'm only twenty two."

I remember the long drive home to my apartment that afternoon, squinting to keep the sunlight out of my dilated pupils, crying in freeway traffic, and praying that I would be alright. I remember thinking about all the beautiful places and things in this world that I hadn't yet seen. I thought about the thousands of insulin injections, testing my urine and, later, blood for glucose every day. It had been every day, hadn't it?..... At least every other day, right?.... I recalled my doctors telling me that I was "doing just fine – see you next visit" for years, and the scared looks on the faces of my loving family whenever I got seriously low blood sugars. As the warm Santa Ana winds blew through the window of my car that day, I remember saying out loud, and to no one in particular "You've got diabetic retinopathy – so now what?"

I didn't yet know that good blood glucose control and good blood pressure control are the cornerstones for preventing and treating all stages of diabetic retinopathy, that lowering my HbA1c value by a mere 10% would have cut my chances of developing "serious, vision threatening retinopathy" almost in half, that lowering my blood pressure even a few points may have similarly reduced my risk of being where I then found myself, that the laser treatment I would receive the next morning and over the next several months would lower my odds of blindness by up to 75%, that in the mid-2000s a whole new field of medicines would be developed to prevent and treat diabetic retinopathy, that helping other people with diabetes and the health care professionals who care for them would become my singular professional passion, that tens of thousands of others had walked in my shoes before me. All I knew was that I could no longer take my health or my diabetes for granted – that if I had diabetic retinopathy, I really was "a diabetic."

I had spent nearly my whole life trying to fit in with my peers who didn't have diabetes, trying not to stand out because I had a medical condition that they didn't really understand, trying not to be defined merely by my diabetes or labeled as "a diabetic." I thought about the words of one of my heroes, Martin Luther King, Jr., who dreamed of a day when people were not judged by the color of their skin (or, it was easy for me to substitute, by a chronic medical condition that they had never asked for) but, rather, by the content of their character. After all, nobody wants to be a person who isn't really what we call them.

It is now twenty one years later, and I have been very fortunate not to lose my vision to diabetes: Fortunate because scores of dedicated researchers and thousands of patients had proven that laser treatment is effective against severe retinopathy; Fortunate because I received treatment in the nick of time; Fortunate because my eyes responded favorably to that treatment; Fortunate because later I found an outstanding diabetes specialist who I knew was on my side; And most importantly, fortunate because very soon after my first laser treatment, I decided that I would control my diabetes, this one, small but significant part of who I am, rather than letting it control me. We would all do well to remember Dr. King's dream and, dare I say it, expand that dream throughout our lives and into the very language we use to identify and respect the totality of our fellow travelers. For those of you who have been diagnosed with diabetic retinopathy, those who haven't, and those who will be, I want you to know that I am on your side.

For more information on diabetic eye disease, consult Dr. Chous' book Diabetic Eye Disease: Lessons From a Diabetic Eye Doctor, Fairwood Press, Seattle, 2003.

Read more about Dr. Chous here.

Visit Dr. Chous' website here.


NOTE: The information is not intended to be a replacement or substitute for consultation with a qualified medical professional or for professional medical advice related to diabetes or another medical condition. Please contact your physician or medical professional with any questions and concerns about your medical condition.

Last Modified Date: June 28, 2013

All content on dLife.com is created and reviewed in compliance with our editorial policy.

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by Brenda Bell
Many people say that depression is a side effect or complication of diabetes. Without discounting the association of the psychological condition with the physical one, I'm not convinced that our high and/or unstable glucose levels are directly responsible for that change in our mental state. My belief is that the unrelenting need for self-care, for following the sort of care schedules that can drive licensed, professional caregivers crazy, is what overwhelms us...
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