Discussing emotions surrounding vision loss is an important part of patient care
The past couple of years have been marked by loss for millions of people – loss of loved ones, loss of jobs, and loss of community and social gatherings, to name a few. Any kind of loss is linked to grief and feelings of sadness and even anger, experts say. That includes loss of vision, which may be caused by conditions such as diabetic retinopathy, glaucoma, or age-related macular degeneration (AMD).
The United States is facing a mental health crisis, particularly among young adults. According to the CDC, younger adults with vision loss had almost five times the risk of serious anxiety or depression compared to adults 65 and older. Researchers speculate this could be because they have not yet developed effective coping skills. According to a study published in JAMA Ophthalmology, depression is also more prevalent in patients with dry eye disease, which affects more than 16 million people in the U.S.
Here’s why eye doctors need to consider patients’ mental health as well as their eye health.
The link between vision loss and depression
Depression is common in people with vision loss. A recent CDC study found that one in four adults with vision loss reported anxiety or depression. The CDC notes that untreated anxiety can increase the risk of developing depression and recommends that people with vision loss be screened for depression and anxiety.
“Grief and loss are really common emotions related to progressive losses of any kind of physical ability,” said psychologist Ann Wagner, PhD, at the Foundation Fighting Blindness conference, VISIONS 2022. “Loss is going to elicit grief.” Dr. Wagner is legally blind due to retinitis pigmentosa. Citing the phrase, “You’ve got to feel it to heal it,” she said it’s important to help patients experiencing vision loss name the emotions they’re feeling and have compassion for themselves. In our culture, many of us – especially older people and men – have been taught to suppress or ignore emotions.
Grief and depression are common in people with vision loss. Acknowledging these emotions is important to show patients what they value.
Loss of vision has been linked to loneliness, isolation, and feelings of worry and fear. Helplessness is the most frequent painful emotion, said Dr. Wagner. Helplessness tells us two “truths”: 1) you can’t control everything, and 2) you care about that thing you can’t control.
Feeling helpless about no longer being able to drive may signal that a person values their independence, for example. Interestingly, Dr. Wagner noted that helplessness often shows up in people with vision loss when they are offered help they didn’t ask for. She gave the example of how her husband used to get her a glass of water every time she said she was thirsty, rather than giving her the chance to get it herself.
How the right approach to patient education can help
Not everyone feels sad or helpless when facing vision loss, however; some people may feel frustrated or angry. “Anger is often functioning as an avoidance; it’s often not the actual core emotion,” said Dr. Wagner. More often anger is suppressing helplessness, fear, or hurt.
An important thing for doctors and caregivers to remember is that emotions can impede understanding, she added. “In the heat of strong emotions, we often can’t remember what people say.”
Strong emotions can impede understanding. That’s where coping strategies and patient education videos come in handy.
Encourage patients with vision loss to adopt healthy coping strategies such as mindfulness meditation, deep breathing, yoga, aromatherapy, or seeking support from a friend, said Dr. Wagner. She also recommended apps such as Mindfulness Coach and ACT Coach. “Start a practice every day to check in with yourself.”
Visual tools like Rendia videos can show patients with AMD or glaucoma, for instance, what their vision may look like if the disease progresses. Educational videos not only improve a patient’s understanding of their disease, but they can also be easily shared with loved ones and caregivers. This can encourage people to seek out early intervention and increase adherence. Let patients know there is hope – studies have shown the majority of ophthalmic interventions increased quality of life in patients with vision impairment.
Dr. Wagner said emotions play an important role in telling us what is important to us. They present a “choice point” where patients can decide if maybe there’s something else they can do – for example, take advantage of the many low-vision aids available. Tell patients, “in this moment, you are in control of your actions,” she said.