What Does It Feel Like to Have Macular Degeneration?
Key takeaways:
Macular degeneration is an age-related vision condition.
People with this condition sometimes lose their central vision.
There’s no cure for macular degeneration, though there are treatments for some forms of the condition.
There are two main types of age-related macular degeneration. And people have very different experiences depending on the type they have. There’s no treatment for dry macular degeneration, but it usually progresses slowly. Wet macular degeneration causes faster vision loss, but there are treatment options available.
Macular degeneration isn’t painful, and it doesn’t change how your eyes look. But it can cause a range of symptoms, including blurry vision, difficulty recognizing faces, and a loss of central vision — which is necessary for basic tasks like driving and reading.
Here’s how four people describe what it feels like to have macular degeneration.
‘I have many dark nights of the soul’
A little over 20 years ago, Diane Marshall received sobering news from her optometrist during a regular checkup. He noticed that she had some drusen spots, which are small yellow or white spots on the retina. And Diane was ultimately diagnosed with an advanced form of dry macular degeneration called geographic atrophy. The area of her eye that’s most affected is the macula, the part that processes what you see right in front of you.
“Probably, in a short period of time, I will lose my central vision,” says Diane, who’s 76 and lives in Los Angeles. “That means that if I were to look straight ahead, and you were in front of me, I would no longer see your face.”
When Diane was diagnosed with macular degeneration, which is a progressive disease, her doctor told her, “Don’t worry. By the time it becomes a problem for you, we’ll have a cure.” But he was wrong, she now knows. There’s still no treatment for advanced dry macular degeneration.
In the last 5 years or so, Diane’s vision has worsened to the point that she can no longer drive. “It’s a big loss of freedom,” she says, adding that she uses a ride-sharing service called GoGoGrandparent and asks her friends for help.
Lots of seemingly small tasks have also become challenging. Diane struggles to plug in her phone charger because she can’t see where outlets are and to read directions on medication bottles. It’s almost impossible to paint her nails and to put the brush back into the bottle when she’s finished. When she goes out to lunch with friends, Diane reads the menu online ahead of time, or she asks a friend to read it to her at the restaurant.
“At this point, someone can be 2 feet away from me, and I don’t know who it is unless I can tell by the way that they walk,” she says. “I can’t even see my own face very well in the mirror.”
The knowledge that her vision will continue to get blurrier is always with her. “I have many dark nights of the soul,” she says. “It’s the hardest thing I’ve ever had to deal with in my life.”
An unpredictable disease
About 14 years ago, Kathy Stephens went to a health fair at work, and someone was giving eye exams. She was told to close her eyes one at a time and describe what she could see on the chart. When she shut her left eye, everything went black.
It turned out that Kathy, who is now a 72-year-old dog trainer living in Connecticut, had wet macular degeneration in one eye and dry in the other.
“I was terrified,” she says. “My mother lost her central vision with macular degeneration.”
Today, the biggest issues Kathy deals with are problems with depth perception and “missing pieces” of sight in one eye. Overall, her sight is still good, and she considers herself very fortunate. Her right eye is better than it was when she was diagnosed, for one thing.
“I think the disease is unpredictable. And I don't think that anybody knows what someone else's experience is going to be,” she says.
Kathy also says that small adjustments to her environment make a big difference. For example, she needs to have a lot of lights in her house. “I’m sitting here in my living room talking to you and I’m surrounded by two very bright lights so that I can see,” she said during a recent phone interview.
Though she struggles to read a physical newspaper because of the color contrast, she’s able to read stories on her iPad. And her house isn’t as clean as it could be, but she can’t see the dust, she jokes.
Kathy is still able to drive, but she avoids it when it’s dark outside. Since her depth perception is getting worse, she downgraded from to a smaller one, which she feels more comfortable operating. “I suspect, at some point, I will have to give up driving,” she says.
Even though she knows she could lose her sight at any moment, Kathy strives to be optimistic about the future.
“I’m not going to tell you that the thought isn’t ever present. But I can’t let it totally affect the way I live my life,” she says. “My overall attitude is: For today, I’m going to do everything I can do, and if something happens, it happens.”
She likes to reference a bit of wisdom someone once told her: “There’s no sense in worrying about things before they happen, because, if they do, you experience it twice.”
An invisible condition
Susan Raupach takes care of her 95-year-old mother who has macular degeneration and is legally blind. So she was already familiar with macular degeneration when she was diagnosed with it.
“I was just so crushed,” she says. She kept thinking, “How am I going to tell my mother — who kept saying for years, ‘I just hope my kids don’t get this?’”
Susan, who is 71 and lives in Connecticut, has wet macular degeneration and geographic atrophy. And she’s legally blind in one eye.
Every 14 weeks, she gets injections in both eyes, which helps stabilize and even improve her vision. The shots aren’t painful, she says. The doctor numbs her eyes beforehand, and then washes them out and puts in drops. And she uses an ice pack in the car while she’s driving herself home.
Susan realizes she probably only sees some of what other people see. But she’s not aware of what she’s missing unless someone points it out. And she’s still able to live a pretty normal life. She doesn’t have a TV in her house, but she loves using her phone. When she needs to magnify something, she takes a screenshot and then zooms in.
Susan tries to shop at smaller stores, since finding things in big ones can be challenging. Sometimes, she has to ask employees to lead her to the aisle she’s looking for. But there are other issues that can come up.
Recently, she was looking for coupons at the register, and she couldn’t see them well enough to tell if they were the right ones — which caused a delay. The person behind her said, “You shouldn’t be in line doing that, making us wait.” So Susan approached her and told her that she’s visually impaired, which means sometimes she can’t operate quickly.
“You do have to explain to people at times,” she says, adding that people can’t tell you have vision problems by looking at you. “You have to put your foot down and say, ‘Just a moment. I need some help.’”
‘I’m having fun’
Sue Labar-Yohey has geographic atrophy and has been legally blind since 2016. But that doesn’t stop her from living a full, fun life.
When she was first diagnosed, Sue woke up in the middle of the night a few times, in the midst of a panic attack. “My emotional mind is flipping out,” she recalls thinking. “I’m hyperventilating. My heart is racing.”
Then, she decided to take action.
Sue, a 69-year-old psychologist who lives in Pennsylvania, contacted her state’s Bureau of Blindness and Visual Services. Because she planned to continue working, they supplied her with a range of resources that she still uses. Her toolkit includes a closed-circuit TV, a hand magnifier, an iPad, MaxTV glasses for distance viewing, and a text-to-speech reader.
“Don’t be afraid to ask for help,” she says.
The major issues that Sue struggles with are reading print materials and seeing faces. She can’t drive, so she’s dependent on others to get around. But her friends are happy to assist.
Sue advises people who are newly diagnosed with macular degeneration to focus on cultivating close friendships. “You have to have these relationships set up ahead of time,” she says.
Since losing her central vision, Sue has taken many exciting vacations. She went to the Bahamas, where she swam with pigs. She also went to New York City by herself and to Mardi Gras. She enjoys kayaking, whitewater rafting, biking, Zumba, and yoga.
“People think it’s all doom and gloom,” she says. “You just have to make sure that you’re healthy and that you’re socially connected and that you have a positive attitude. I’m having fun.”
Plus, she adds, there’s an array of new, successful treatments on the horizon. “This is the best time in history to be going blind,” she says.
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
Age-related macular degeneration is a leading cause of vision loss. But, as these stories show, not everyone with macular degeneration has the same experience. Some people with early stages of dry macular degeneration notice few, if any, vision changes. And their vision may be stable for years or decades. But people with advanced dry macular degeneration or wet macular degeneration can experience rapid vision changes, some of which can be permanent.
While there’s no treatment for dry macular degeneration, there are things you can do to keep your vision healthy. Taking macular degeneration vitamins (AREDS 2 vitamins) can slow the progression of intermediate and advanced macular degeneration. And using an Amsler grid every day can help you spot vision changes early, so you can get help from your eye doctor quickly.
As discussed above, it’s also important to ask for help and have access to services and tools you need to stay as independent as possible. Whether it’s adjusting your driving to deal with night blindness, adjusting your indoor lighting, or using voice-to-text, there are strategies that can help improve your quality of life.
Finding a community can also help you navigate your new normal. People with low vision live vibrant and full lives, and they have tips that can help you adjust your routines and stay engaged in the activities you love.
Why trust our experts?
