Coming to Terms With Age-Related Macular Degeneration Vision Loss

By Jill Adelman, RN, as told to Kara Mayer Robinson

I was diagnosed with age-related macular degeneration (AMD) in November 2014, when I was 57. I’m now 66 years old.

When I found out I had AMD, my initial reaction was complete devastation. I was in a state of shock, not knowing what the future was going to hold. At the time I was a registered nurse in a very high-volume trauma center. I realized that my career would end earlier than I expected. That wasn’t easy.

To be honest, the feeling of devastation has never really changed. But at the same time, I feel as though there’s a reason for everything, and this has given me the strength to work through the daily changes of my life.

For a long time, my vision was mostly stable. But recently, it’s been changing.

Now I find it more difficult to accomplish tasks that were easier a year ago. Makeup has become almost impossible. General computer work has become more frustrating. I can always make the font larger, which is a big help, but sometimes it’s hard to balance contrast and glare. It would be wonderful if I were more computer-savvy.

Navigating my environment has definitely become more difficult, especially when it’s dark out. I set my watch for sunrise and sunset so I know when it’s best to stay indoors. I’m no longer comfortable being in the car at night.

Fortunately, the changes to my vision have been slow. But I’m always on the lookout for a shift in how well I see. Every morning when I get up, I look around to see if anything has changed.

Living With Uncertainty

Dealing with vision loss has been a struggle. It hasn’t been easy to accept the changes that AMD has led to. Another challenge is uncertainty. I don’t know what the future may hold, and that’s difficult.

But I’ve learned how to adjust to each obstacle and make it easier to live with wet AMD. I’ve made lots of changes in my home and in my daily life.

I have special lighting throughout my house. For example, I have motion-sensor lights in every closet and on the staircase. So as soon as I open a door, a light goes on.

I always carry multiple devices to help me see better, like magnifying glasses and flashlights. I set all of my electronic devices, like my desktop computer and my iPad, to display large font with high contrast.

Since I don’t see well at night, I rarely go out in the evening without my husband. He makes sure I’m safe and helps me in low-light situations.

The Power of People

Fortunately, I have a very strong family support system. My children, including my children-in-law, don’t treat me any differently since my diagnosis, but they’re always there no matter what I need. I never hesitate to ask any of them to take me somewhere, get something for me, or help me at any time.

If we’re going somewhere and there’s a curve or a ramp, one of my older grandchildren is at my side to assist. They instinctively come and take my hand. I might not need as much help as they’re willing to offer, but this is what’s natural for them and I make it natural and normal for me.

Another powerful way I’ve found to deal with AMD is being an advocate for others. I try to get the word out to as many places, organizations, and facilities that I can. I help BrightFocus Foundation advocate for more education, knowledge, and patient support.

Being an advocate for others and showing them they’re not alone in dealing with this disease helps me mentally. If it gives one person a little bit of comfort, that makes me feel better.

Acceptance and Hope

I don’t think I’ve really come to terms with vision loss, but I’ve accepted that this is going to be a part of my future.

I force myself every day to learn and readjust how I approach things, which helps me live the most normal life I can. Because there are new treatments on the horizon and more research is being done, I always have hope for the future.

Originally published on WebMD on March 14, 2023. Republished with permission.

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