Living With Macular Degeneration: A Personal Journey

About 15 years ago, my eye doctor broke the news: I have the beginning signs of age-related dry macular degeneration.

I had gone to my regular eye exams for years and didn’t think much when I first heard my diagnosis. Frankly, there were more important things happening in my life. My eye doctor didn’t seem too concerned either and just started me on regular medication and continued monitoring my eyes.

Things carried on like this for several years until one day, my eye doctor said I should start seeing a retinologist. But I really didn’t feel the effects of my diagnosis till after I retired from teaching.

My prior school district had asked me to take charge of an extracurricular group with students. Even though I was enjoying retirement, I agreed to work with the group for a little while. After four years of leading the group, I was driving home one day during a horrendous rainstorm. It became apparent that, with my eyes, I should not be doing a 40-minute drive on the expressway in the rain. It was at that point that I stopped working with the student groups and began embracing retirement.

Staying Self-Reliant After Vision Loss

I grew up with an older sister who lived with disabilities. Our family motto became that a disability is as limiting as you let it be. This perspective came into play in a big way as I coped with my vision challenges.

I can still make Christmas cookies. My iPad holds my recipes and has accessibility features to make them easier to read. I can take a picture of a menu and invert the colors so it’s easier to read. Embracing technology has helped me maintain my independence.

But this past summer, I finally stopped driving because I no longer felt safe on the road. When you first give up driving, you're more than willing to let people give you rides. Eventually, you begin to feel too dependent and lose privacy—it can wear on you.

I’ve taken it upon myself to start using other driving services like Lyft or Uber when I can, whether for a doctor’s appointment or some shopping. I sometimes have my groceries delivered and use my resources to maintain normalcy and independence in my daily life.

Providing Support When Asked

I wish people would understand that for a person living with macular degeneration, we want to be independent, but we might need a little help to do so. However, that doesn’t mean we need to be taken care of at that moment.

We need support, which can look like using black font on your website (instead of gray) or helping me read the expiration date on a food box. I will ask for help when I need it, once you tell people you have vision issues, they are often more than willing to help.

Coping with a New Diagnosis

If you just received your macular degeneration diagnosis, don’t panic just yet. Do your research and understand your options and the resources available to you. Engage your support network, from your doctor to your family and friends, and create a game plan that works best for you.

It can be hard to ask for help, especially the first time you need it. Find the inner strength to admit when you are having vision challenges and move past that initial hesitancy that many feel. You’ll find that it gets easier to navigate with time.

About BrightFocus Foundation 

BrightFocus Foundation is a premier global nonprofit funder of research to defeat Alzheimer’s, macular degeneration, and glaucoma. Through its flagship research programs — Alzheimer’s Disease Research, Macular Degeneration Research, and National Glaucoma Research — the Foundation has awarded nearly $290 million in groundbreaking research funding over the past 50 years and shares the latest research findings, expert information, and resources to empower the millions impacted by these devastating diseases. Learn more at brightfocus.org.

The information provided in this section is a public service of BrightFocus Foundation, should not in any way substitute for the advice of a qualified healthcare professional, and is not intended to constitute medical advice. Although we make efforts to keep the medical information on our website updated, we cannot guarantee that the information on our website reflects the most up-to-date research. Please consult your physician for personalized medical advice; all medications and supplements should only be taken under medical supervision. BrightFocus Foundation does not endorse any medical product or therapy. 

Some of the content in this section is adapted from other sources, which are clearly identified within each individual item of information.