If you’ve recently been diagnosed with macular degeneration, Mary’s story may feel familiar.
“My name is Mary. . . . I've had some macular degeneration for since 2017, . . . . When I went to the retinologist, he just said, oh, I'm terribly sorry. There's nothing we can do. I didn't know where to go from there, what I could do.”
Hearing “There’s nothing more we can do” plunged Mary into a world that suddenly looked unfamiliar.
Emotions throwing you
Moments as Mary describes can feel shocking—painful reminders of how much has changed:
“I would be very emotional when I tried to do something, especially in public that I thought I could do and I couldn't. The tears would just come. And I found that was very common, that you've been doing these things all your life and suddenly you can't.”
Many people with vision loss say this emotional reaction is one of the hardest parts to prepare for.
Hadley is rolling out the new Adjusting and Coping video series that shares real voices of people living with vision loss, talking honestly about hard moments and how they move forward. You don’t have to “get over it”—you don’t have to go through it alone.
When words begin to disappear
Reading is often one of the first losses people notice—and a hard one:
“Letters would just totally not be there, and more and more letters were just absent. . . . And so my world was cut back to really having a very hard time reading anything. . . .”
Reading challenges affect mail, recipes, medication labels, forms to fill, and staying connected to the world.
It’s also one of the areas where options exist, even when your eye doctor says restoring vision isn’t possible. Hadley’s free Reading with Vision Loss workshop series explores a variety of practical ways people read with macular degeneration. There’s no single right solution—just what works for your eyes and your life at the moment.
Feeling alone
Vision loss can feel isolating, even among people who care about you. Mary shares:
“But there really are only two people that understand what I can't see. One is the doctor at the support group because he worked with me and took my vision and that. And I have another friend who's about the same severity as I am, maybe a little less.”
Mary then found connection in a Hadley Adjusting & Coping Together virtual support group, where she and others shared what they were going through.
Many also find support in online communities like the Living with Macular Degeneration Facebook group. It’s not hosted by Hadley, but Hadley members take part, and the group just reached 20,000 members!
Getting around
Giving up the car keys can affect spontaneity, privacy, and connection to the world. Mary says:
“I have to rely upon somebody else . . . I can’t just go where I want to go.”
Mary’s comments reflect the experience of many, and it takes getting used to. To explore practical solutions for how to get around when driving is no longer an option, Hadley members shared what’s helped them in this Hadley Presents episode Transportation Ideas from the Hadley Community.
Sharing your vision loss with others
Helping others understand your vision loss can be challenging, too—especially because it tends to change over time and the disability is not obvious to others.
“So that's kinda hard when people, like at church, they said, you mean you can't see that on the, that's projected on the wall there? No. You can't see that. No, I can't see that.”
Many Hadley members say the Living with Macular Degeneration workshop not only helps them, but also becomes a way to explain their vision loss to family and friends.
Where to start
You don’t have to solve everything at once. Start with what feels most important right now. Hadley’s free Living with Macular Degeneration workshop series is a good place to begin.
Hadley is here to support you, whenever you need it: 800-323-4238.
What has helped you for living with macular degeneration? Please share in the Comments below.
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