Where Do I Start? How to Share Your Macular Degeneration Story

"I want to share my story but don't know how to start."

If this sounds like you, you're not alone. Getting started can be the hardest part. Especially if this is the first time you've ever shared your macular degeneration story.

Sharing can be scary at first

You might wonder how others will respond to your experience, or if they will respond at all. You may feel worried that nobody wants to hear what you have to say.

We can assure you that isn't true. We read every story that gets submitted to MacularDegeneration.net. Each and every story has a tremendous impact, and helps raise awareness for the challenges of living with macular degeneration. You never know who will read your story, and how it might resonate with them.

After finally taking the leap, many people will say that they can't believe they waited so long to share their story. Some will even say that sharing their macular degeneration story has helped them cope with their vision loss and the emotional roller coaster that can accompany it.


Ready to share?

We've gathered the components that make up many macular degeneration stories and outlined some pointers to walk you through sharing your story. While there isn't a single format or structure for a story, I hope these help you with sharing yours, whenever you are ready of course. Let's get started!

Introduce yourself

Start with a short introduction about yourself. Remember your audience does not know who you are, so include relevant aspects about your background or interests.

What should I write about?

When we live with a condition, we may not think much of the frustrations, changes, and new challenges we face. It becomes a part of our daily routine. There are others living with macular degeneration who encounter many of these seemingly mundane experiences and sharing in them may help them in their journey more than you can imagine.


If you've been diagnosed, share about that experience, and how you were feeling about it. Have those feelings changed? Did something prompt that doctor’s visit or was it a regular check up?

Your symptoms and treatment

Many people will open up about their symptoms, and what they've been doing or trying to manage them. They talk about their visits to the doctors, and what they are learning about their condition. How long have you been living with macular degeneration symptoms? Have you undergone any tests? What treatments, if any, are you using and how has that been going?

How you are doing today

The end portion of the story usually includes a reflection or an update on how you are doing. Have you made any progress since the beginning of your journey, or have things gotten worse? What mental hurdles are you facing? Have you found support online or in-person? What are your hopes or plans for managing your macular degeneration?

Don't forget to make it personal

No two stories are the same. Be sure to incorporate some personal touches to make your story unique to you. Whether it's your raw emotions, sense of humor, or writing your story like a poem or song, your story can be as unique as you are.

Share your macular degeneration story on MacularDegeneration.net.

We look forward to reading your story!
-Courtney & Shelby (MacularDegeneration.net Team Members)

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