Community Views: The Emotions of an MD Diagnosis

We are all different in this community, but most of us have one thing in common.

We have been through a day – a fateful day – when we heard the words “You have macular degeneration.” Some of us have wet macular degeneration, some of us have dry. Others have myopic macular degeneration and, still, others have different conditions, but most of us have heard those words in some form or another.

The diagnosis

My optometrist was the one who broke the news to me in my early sixties. I had been half-expecting the diagnosis because both of my parents had AMD. I was still sad and worried when I heard the news. Actually, I was quite downhearted, because I had seen the challenges and obstacles my mother and father had to face.

My AMD was dry and only in one eye at this time. The optometrist convinced me that there was no actual treatment for this very early stage. At one of my later visits, as she lined up her equipment, she said to me, “The very worst thing that can happen now, is if we find it in the other eye too.” And she did!

I thought “That wasn’t a very encouraging or accurate comment,” and I found myself a retinal specialist.

Understanding community experiences

Recently, on our Facebook page, we asked our community “When I was diagnosed with MD I felt _______."

Approximately 50 community members responded to the question and shared how they felt when they were diagnosed. We have brought their comments together, below.

Feelings of fear

One of the most common responses was scared, frightened, or afraid.

Some people were scared because they had seen the effects of this disease on their relatives. Others who had family members with the condition were resigned to developing AMD themselves.

“Old and scared. My mom had such a difficult time with the eye injections.”

“Afraid because my uncle had lost his vision from this and his son had it also.”

“Devastated, since my mother also had it before real treatment was available.”

“Petrified!”

“My father lost his vision because of MD.”

“Resigned. No surprise since my mom had it and my younger sister as well.”

“I felt disappointed and saddened. I was hoping to escape my mother’s experience with AMD but that didn’t happen.”

A bit confused

There was confusion for some who knew nothing about macular degeneration or didn’t have it in the family.

“Confused and no idea what the hell is going on. I never heard of the retina or any eye diseases.”

“Scared because I had never heard of this, and even more scared that I would lose my sight.”

“I felt scared and surprised, as neither of my parents had it.”

“Shocked and terrified. I was only 25 at the time of my diagnosis.”

A sense of loss

Some people felt sad and empty

“Sad beyond all words. So sad.”

“Empty, like my rug had been pulled out from me.”

“Empty, I was in my early 50’s.

Worried and concerned

Some community members were worried about losing their driver’s license. Others worried about losing their freedom in general.

“I will lose my freedom to be independent.”

Determination

A will to get through this kicked in early for some community members.

“Determined. A profound insight set in reminding me of the importance to appreciate everything seen.”

“I knew I had nothing to gain with worry or fear.”

“Determined – to preserve my sight. Had my first injection the day of diagnosis.”

“I felt like, if I have to, then, I will take the shots to maintain my vision.”

Changing perspectives

It was heartening to see that many community members had gradually changed their attitudes towards MD as time progressed. They had started off fearful but had developed the inner resources to cope as time went by.

“I was afraid of the unknown.”

“Now that I’ve had it since 2019 I realize that yes, you have to adjust your life with it, but you can manage.”

“Scared! ...Now almost five years later I feel determined! Determined to do what I can and have control over!”

“I was shocked and blindsided (no pun intended).”

“I have accepted it now but am... remaining hopeful.”

“Shocked and scared" shared one community member. They also said: “[I'm] more comfortable with it now and happy the injections have helped.”

“Devastated... [but] I am doing OK so far.”

“Rushed, shocked, and confused... Then I saw a retinal specialist... who answered all my questions and alleviated all fears.”

“Drained... everything drained out of me... life, hope, happiness, the future. [But] I am doing much better with it. It is now just a part of me.”

Finding support in the community

Many people felt that being in this community had given them support and helped them on their journey with macular degeneration. I know I certainly feel this way.

Others said:

“This community has been a great support.”

“Communities like this help on the tough days.”

“This site, and the kindness of members, is a blessing.”

Thank you to everyone for sharing your feelings with the community. If you didn’t get an opportunity to comment previously, please feel free to add your comments below. We value and appreciate your contributions.

If you join the community, you’ll be able to read stories and articles by community members, make comments, and ask questions on our forums.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).