What Having Poor Eyesight Taught Me About Being a Proactive Patient, Part One

Acute diseases come and go. Chronic diseases are here to stay. Multiple sclerosis is a chronic disease that would be enough to handle for most people. But there are many of us who live with multiple chronic diseases. With each comorbidity comes increased complexity and challenges in managing one’s overall health and well-being.

You may already know that I am diagnosed with several chronic diseases. I have multiple sclerosis, rheumatoid arthritis, osteoarthritis, Raynaud’s syndrome, depression, high cholesterol, and more. Sometimes it’s hard to know which condition to blame for what problem.

A chronic patient from an early age

There are some chronic conditions that I doubt too many people think of when they consider the world of “chronic disease.” I received my first chronic diagnosis when I was 4 years old; I was diagnosed with myopia, aka nearsightedness. It wasn’t a surprise that I would have myopia because both my parents are severely nearsighted. Perhaps the age at which I started wearing glasses was surprising. I received my first pair of glasses at the age of 4. I still have those first glasses which look so very small to me now. I didn’t know it at the time, but I was learning my first lessons of how to be a chronic patient at the same time I was learning to read.

Provide information and feedback to the doctors that only you can

I feel fortunate that I began learning how to communicate with medical professionals from an early age. During eye appointments, it was up to me to provide feedback to the doctor in order to correctly assess my prescription or other needs. This was decades before the automated equipment that can judge your prescription became commonplace in every eye doctor’s office. I had to tell the doctor which image looked better and how things changed when he flipped mysterious pieces of glass in that huge strange contraption held up to my face.

Communication is about developing a relationship with your doctor

The relationship I developed with my eye doctors from an early age taught me how to communicate with medical professionals in a way that would result in the best possible outcomes. Primarily without my input, I would not be assessed properly and prescribed the glasses or contacts that would allow me to see as well as possible.

Listen to what the doctor says

As my nearsightedness worsened over the years and as I was about to head to college, my ophthalmologists warned me about my risk of serious emergency situations involving my eyes. Due to severe myopia, my retinas in the back of my eyes are stretched thin and are at risk of tearing or becoming detached. For years, I kept this in mind and knew to immediately report sudden changes in vision. Lack of action could result in permanent vision loss which has always been one of my greatest fears.

Don’t hesitate when something just isn’t right

The morning that I woke up in 2000 and couldn’t see out of my right eye, I was scared but I didn’t panic. My vision looked like someone had smeared greasy vaseline over my glasses. The world was blurry and distorted. I didn’t hesitate to call my ophthalmologist but I did cry because I knew something was wrong and I happen to like being able to see clearly out of both eyes.

My doctor quickly determined that I wasn’t experiencing a torn or detached retina. But since I couldn’t correctly identify colors, he referred me to a retinal specialist who promptly sent me to a neuro-ophthalmologist, even calling ahead to the office to pave the way. By then, only hours into my day, I knew that something was terribly wrong.

Learning how to communicate with doctors takes practice

As the story continues in Part Two, I want to let you know that learning how to communicate and interact with your physicians takes practice. It takes patience and respect from all parties involved. It’s also essential in managing our lives with chronic disease.

Until next time,

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