Vision loss, whether gradual or sudden, can be a frightening experience. Fear and worry can develop when thinking about how vision loss will change the way you live.
Justin Romack, who was born with congenital glaucoma, gradually lost his sight until age 26, when he was left with only light perception. A few years later, he lost that as well. Though vision loss was expected with his condition, Justin didn’t realize the weight of his anxiety until he became an adult.
“Vision loss was not problematic to me through primary school,” he said. “After I graduated high school is when I started to experience othering. College was really difficult. I didn’t realize how bad my mental health was.”
Justin lives with generalized anxiety and chronic depression. However, it’s unknown whether his blindness caused either illness.
“It’s hard to tease out how much of my [anxiety and depression] are due to my blindness, or whether that’s just the way my brain is wired. But I definitely think they fed into one another.”
It’s of course possible for people to have anxiety or depression that doesn’t stem from vision loss. But research suggests a strong relationship between the two. It’s also common for vision loss to worsen existing mental health difficulties.
A study done by the Centers for Disease Control and Prevention found that 1 in 4 adults with vision loss reported anxiety or depression. Young adults are nearly five times more likely to experience these than adults 65 and older. It’s suspected that younger adults are more prone to emotional hardships because they have yet to develop coping strategies.
But this doesn’t undermine the presence of poor mental health in older adults experiencing vision loss. Studies following adults aged 60+ found that anxiety disorders are much higher in visually impaired adults.
The anxiety that accompanies vision loss can be present at all levels of impairment. For example, nearly all adults over the age of 40 experience an age-related vision change called presbyopia. Presbyopia affects the eyes’ ability to focus up close. This makes it difficult to see during near tasks, like viewing images on your phone and reading small print.
Presbyopia can be corrected with a pair of reading glasses or progressive lenses. But the idea of losing clarity of your near vision can cause anxiety in adults who have never faced vision problems before.
This may be especially true for adults who rely on near vision for their livelihoods. Some examples of this include tailors, surgeons and farmers. Reading glasses and other forms of presbyopia correction allow these people to perform their jobs with clarity as they provide for themselves and their families.
If you experience one or more of the following symptoms, you may have anxiety:
Trouble falling asleep or staying asleep
Difficulty concentrating
Feeling wound-up or on-edge
Unexplained aching of the stomach, head or muscles
Irritability
Getting tired easily
Uncontrolled feelings of worry
It’s important to speak to a doctor about prolonged anxiety. There are several treatment and management options that can help calm your anxiety and its associated symptoms.
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Vision loss and depressionProlonged anxiety that goes untreated can develop into depression. This is something Justin experienced once he lost his vision. He avoided the mental health issues surrounding his vision loss for a long time. However, there came a point at which he could no longer deny his reality.
“You can only repress the emotional energy for so long,” Justin said. “But, like carbonation in a soda can, it’s gonna have to come out. The emotional energy doesn’t just go away.”
Accepting vision loss as a part of his future was difficult for Justin in the beginning. He feared that lacking sight affected his value as a contributing member of society.
“I dealt with a lot of worthlessness,” Justin said. “I thought I was going to be unemployed my entire life and wouldn’t be able to make a living for my family. That’s a really hard emotion to deal with. It was a dark period.”
Justin’s fear surrounding his quality of life with blindness is not uncommon. In a survey that asked people which modality (sense) they’re most afraid to lose, an overwhelming majority of people answered vision.
This is likely because of the belief that being blind negatively affects one’s quality of life. Studies examining vision loss and quality of life suggest that there is a slow decline in life quality at the onset of vision loss. This decline continues as vision worsens.
Quality of life when living with vision loss is determined by a number of things. These include emotional well-being and social relationships. The inconveniences of a person’s visual impairment are also considered. Independence also affects quality of life. This is something many people who experience vision loss fear they will lose.
Those who experience one or more of the following symptoms may have depression:
Disinterest in activities you once enjoyed
Fatigue, even after a good night’s rest
Feelings of guilt, helplessness or worthlessness
Sleeping too much or too little
Anxious or sad feelings most or all of the time
General frustration or irritation
Thoughts of self-harm
It’s important to talk to a doctor if you are dealing with symptoms of depression. There are various therapies and medications that can help relieve these symptoms and restore your mental health.
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Why vision loss affects mental healthThere are several reasons vision loss affects mental health. The underlying factor in most reasons has to do with a new lack of independence.
For example, vision loss is associated with difficulty walking up and down stairs. Navigating unfamiliar environments also becomes a challenge. This increases the risk of falls and injuries, especially in older adults.
The fear of falls or injury often keeps older adults isolated. They are no longer getting the physical or social activity they once had. But being socially and physically active is good for cognitive health. When the brain isn’t getting that stimulation anymore, it can increase feelings of isolation and cause a decline in brain health.
Even with a supportive family, Justin remembers feeling alone in regards to his blindness.
“When vision loss happens, you’re on an island — or at least you think you are,” he explained. “For me, I felt like I had the word problem on my head and on my heart — that’s a pretty heavy burden to navigate the world with. So, of course you’re going to have mental health problems with that."
Not long after he’d lost the remainder of his vision, Justin experienced a turning point in his vision loss. He finally allowed himself to experience the thoughts and feelings he’d fought for so long.
“It was the emotional energy that I’d repressed that had to come out, and I had to be honest about it,” he said. “That was a huge moment for me. It’s not like everything was perfect after that, but it was the first moment where I could really admit: ‘Alright this is me. This is what I’m dealing with and I’ve got to do something with that.’”
After deciding he didn’t want to feel isolated anymore, Justin did everything he could to get off his metaphorical island. He started utilizing social media to find and interact with people going through similar experiences.
“I found a community of really nerdy but awesome blind people who had similar interests as me,” he said.
To keep the brain sharp, Justin encourages people with vision loss to take advantage of various resources. These resources can help them stay connected and involved in their preferred communities.
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Learning to live with vision lossDealing with vision loss can certainly be traumatic. It’s important to process and grieve the loss by talking with family, friends and even a therapist. Talking through your experience can help you manage the feelings surrounding it.
Justin works as an Assistive Technology Coordinator at Texas A&M University. As such he is a big advocate for finding and taking advantage of adaptive resources. These resources can help you live your life as freely and independently as possible.
“People are fearful that vision loss means they’re going to lose their autonomy and that they won’t be able to do the things they enjoy,” he said. “There are so many ways to function moving forward. But it’s a matter of plugging into those resources to show you how.”
Some of the best resources he recommends include working with vocational rehab facilities. These facilities provide blind and visually impaired people with technology and vocational training. They also offer accommodations that can support them in their home and workplace.
Other resources include centers for independent living. They teach skills for blind and visually impaired people living on their own.
There is also a level of personal reflection and acceptance required when you start to lose your vision.
People place a lot of their value in their physical abilities. When an ability is lost, people often believe their value as a human decreases. Justin often explains to students that a person’s worth extends beyond their ability to see.
“My value isn’t restricted to the tasks I can do with my hands,” he says. “A disability does not change what you know in your heart or in your head. It may change your strategy moving forward, but that doesn’t make you less than.”
Learning to accept yourself and understanding your worth are vital. And developing strategies to navigate the world make it possible to live a fulfilling, independent life with vision loss.
“I know some very, very successful blind people,” Justin said. “Blind people who are changing the world in really incredible ways. Can I fly an airplane? Absolutely not. But there are 100,000 other things I can do.”
Helpful resourcesTo find resources available in your area, check out the following organizations. These websites are full of helpful information regarding vocational rehabilitation and assistive technology. They also offer ways to get involved in the blind and visually impaired community.
