My Diagnosis Story: Linda

It's my 10-year anniversary with macular degeneration!

It’s hard to believe it’s been over 10 years since I was diagnosed with age-related macular degeneration (AMD). There have been many highs and lows, but by far my most memorable and rewarding experience has been "paying it forward" through my advocacy. Easing the way for others with the same chronic, incurable condition has given me new purpose and shifted my focus towards helping others face the challenges AMD evokes and away from "poor me."

Gradually losing your central vision is a hard pill to swallow, but it is so much easier to swallow when you have the support of others who understand. Each journey is unique and needs to be told. This is my story.

Family history repeats itself

In my family — on both my mother's and father's side — there has been a history of AMD. When my mother transitioned at 86, she had been legally blind with AMD for more than 10 years. On my dad’s side, my cousin was also legally blind with AMD. Both had little central vision.

Being around family members with AMD, I was exposed to the challenges it brings, such as not being able to drive, difficulty recognizing people, reading with magnifying devices, and seeing in dim lighting. Out of 5 siblings, I am the only one with AMD — good news, but bad news if you’re that one! Long ago, I reconciled that we all have different health issues and lessons to learn. This is my health challenge!

How it all started

At age 65, I had surgery to remove cataracts in both eyes. I was excited about the possibility of not wearing glasses after needing them full-time ever since I was tested in the first grade.

It was a simple operation that went smoothly. However, almost immediately afterward, the surgeon detected the early  stages of dry AMD, the same condition my mother and cousin endured. It wasn’t a huge surprise but certainly not welcome news. I have always had issues with my eyes, such as chronic uveitis (inflammation of the iris), when I had injections in my eye after the steroid eye drops didn’t work. I still use steroid eye drops to keep the uveitis from reoccurring. My vision was problematic from the start.

In my early 70s, my vision started to decline

I had no symptoms before my AMD diagnosis, nor did I have any noticeable vision changes for the first 5 years. My AMD was being monitored annually and I started taking eye vitamins daily, the only recourse available.

However, in my early 70s, my vision started to decline. Objects became blurry and pieces of printed words and numbers disappeared. Dark places became harder to navigate, which I first noticed in a movie theater when I had to wait until the light on the screen got brighter, enabling me to find my seat. Driving at night was also difficult. My life as I knew it was changing.

The reality of my diagnosis began to sink in

The intermediate stage brought new challenges, both physically and mentally. It didn’t hit me hard until my vision decline became more noticeable at about 5 years post-diagnosis. The reality of it started sinking in, and I actively searched for information and support online. I began regular check-ups with a retina specialist every 6 months. Up to that point, I thought little about my future with AMD and paid little attention to little telltale signs. But that all changed.

At the intermediate stage, my perspective shifted to the negative, which was unusual for me. I was letting AMD rob me of life’s joy — just as my reclusive mother had before me. It was at this point I consulted with a therapist to identify what was happening and how to restore my joy of living. I am so glad I did.

Professional counseling helped me face my fears

Although my condition was unchanged, therapy helped me understand exactly what it was that I was fearing — becoming a recluse like my mother — and being vulnerable. I prided myself on being fiercely independent and couldn’t fathom relying on others or asking for help. Professional counseling helped me acknowledge and face my fears and find peace with my diagnosis.

Additionally, becoming an advocate on the website I discovered — MacularDegeneration.net — helped me find a nurturing community who understood and supported me. AMD no longer feels like a curse to endure, but rather an opportunity to "pay it forward" and evolve spiritually. I turned my lemon into lemonade!

There IS hope and joy beyond diagnosis — I may have macular degeneration, but it does not have me!