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Perspectives: Living With Macular Degeneration

Reflecting on thought-provoking statements from the MacularDegeneration.net community:

Fear of the future with vision loss

Recently an article on our site was discussing "fear” as it relates to our diagnosis and the fear of what our futures held for us. I distinctly remember one post that started: "I’m too old to be scared, I just take it as it comes."

Oh my! I thought, isn't that a stoic statement? Upon further reflection, it seemed like a profound statement. Was it made by a person who has come to accept what life throws at us? Was it a healthy attitude or a cynical one? What do you think?

Accepting a macular degeneration diagnosis

A few times over the years, members have expressed frustration when they keep reading the advice about diet, etc. They say that they’ve followed the advice, and nothing works: “I am simply tired of telling my mind that x, y, and z will help when for me they did not. It seems like setting myself up for failure." She worked in all those areas to prevent macular degeneration and it still progressed to wet, which actually hasn't seemed to make her vision much worse, if at all. "So, in the end, for me enjoying life and all it has to offer and letting my eyes do what they want seems better than paying strict attention to things that have not worked."

Tired of being offered advice for vision loss

"Acceptance seems better than fighting only to fail again. For those for whom diets have worked - of course, they should stay on an eating plan that works for them. Maybe I am just tired of being told what will work when it hasn't for me.”

Wow! That one really got to me! The ”inner chicken” in me, won't allow me to quit fighting AMD, not yet anyway. I'm probably going to go down swinging, I don't think I'll soon give up diet, exercise, and learning about my disease. But that's just me, I can respect the poster’s point of view.

Range of emotions

Shock, fear, anger, resentment, denial, helplessness, sadness, frustration, relief, and acceptance.  We see all of these emotions on our site, don’t we? As an advocate and moderator, I do see all these emotions on posts by our members. Believe it when I tell you, all of your comments and posts are noticed and read.

We try to respond to as many as we can, with the proviso that we try to validate what you are expressing and offer help and encouragement. The moderators also try to answer questions and refer you to articles that cover the subject content you are posting about. We are not doctors and cannot give you medical advice. But the collective knowledge and experiences of this large group are profound, we can and do learn from each other daily.

Feeling isolated and alone because of vision loss?

We can truly feel misunderstood, even by our loved ones and friends. It is a hard task to explain our vision decline to others.

They say things like “if your vision is so bad, how can you still drive?” Or, “How can you read on your device but not on a regular book?”

It’s a daunting task to try to explain to them about contrast, backlighting, and such. As to driving, I’ve pretty much given up night driving and I restrict my daytime driving to areas I am familiar with. Also, if I’m even a little unsure of the location, I will load it into Google Maps and activate the voice function, to announce turns and such, so I don’t have to rely on reading those pesky street signs. This sounds shocking to the uninitiated, but you guys know what I’m talking about. A final word on driving... I will surrender my keys when and if it gets too risky. I solemnly promise this!

Closing thoughts: Sharing the macular degeneration experience

There is a truly wonderful article written by Shelby Comito titled, See the World Through My Eyes.  It captures our vision problems with picture examples and has been for me, a powerful tool and aid for me to explain to loved ones, what I'm going through. I urge you to tap the hyperlink on the title and read it if you have not already done so.

Well, that's it for this article. I'm going to go back and read some more of your posts and thoughts. Thank you for being part of MacularDegeneration.net, a place where we understand each other in a way even our loved ones can't imagine. Wishing you well on your health journey.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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