Living With Wet Age-Related Macular Degeneration

Wet macular degeneration (wet AMD) is the most common cause of vision loss in the United States (and other Western countries). When a person gets a diagnosis of wet age-related macular degeneration, facing the possible impact of severe visual impairment is inevitable.

Coping with the emotions that come along with a chronic (long-term) condition can be quite a challenge, particularly when the condition may involve the loss of one's sight.

The launch of new remedies, such as anti-VEGF therapy is said to have revolutionized the treatment of wet AMD. But, in spite of new treatment modalities, there is still a need for the adaptation of effective coping skills and for receiving emotional support in dealing with the challenges of treatment for wet AMD.

Emotional

The emotional aspects of learning that a person has a condition such as AMD can be overwhelming, to say the least. New studies are being conducted to evaluate whether people who are dealing with wet AMD are getting their emotional needs properly addressed.

Studies

A 2017 study of 300 people with wet AMD and their caregivers, showed the need for emotional support for symptoms of anxiety and depression. The study found that 89% of the study participants who had symptoms of anxiety, and 91% who had depression, were not receiving adequate emotional support, nor did they receive appropriate psychological treatment.

The study, published in the American Journal of Ophthalmology, discovered that the primary cause of anxiety reported by the participants was the fear of going blind, as well as concern about the effectiveness of treatment.

According to study co-author, Dr. Tariq Aslam, “There have been amazing scientific achievements in diagnosing and treating serious eye diseases, such as wet AMD, which have revolutionized our ability to reverse life-changing vision loss. However, we must not forget the human element when applying all this to ensure all our patients can reap the full benefits of this cutting-edge science.“

Depression

A 2016 study discovered that people with wet AMD were particularly prone to depression, compared with those in the study who had other eye disorders. The study also discovered that the rate of depression was high among those receiving VEGF treatment, particularly when treatment outcomes did not meet the person’s expectations.

Anxiety

A 2017 study of 615 visually impaired people aged 60 or over—of which 55% were diagnosed with AMD—showed that 15.6% had symptoms of anxiety (compared to only 11% of people with normal eyesight). The visually impaired adults in the study were particularly prone to anxiety disorders related to specific places or social situations (such as catching the city bus or eating at a restaurant).

The Stages of Grief and Loss

The symptoms of depression are so common in people who have conditions that cause vision loss—such as wet AMD—that some experts have compared the initial reaction to the condition with going through the stages of grief and loss.

These stages have been defined by Dr. Elisabeth Kubler-Ross. The stages of grief and loss (as they pertain to a diagnosis of wet AMD) may include:

• Denial (denying that a person has wet AMD) is usually a temporary defense mechanism that helps to buffer the initial shock of learning that one has a serious chronic illness.
• Anger can involve misplaced feelings of rage and or jealousy towards those who don’t have vision impairment.
• Bargaining in the hope for more time to postpone vision impairment may involve bargaining with God or a higher power in exchange for a reformed life.
• Depression may be a time of silence, sadness, and grieving the loss of having normal eyesight. It is a stage that may involve detaching from others while working through the feelings that accompany the grieving process.
• Acceptance may come after working through other stages. A person comes to a place of accepting the condition and starts to be open to adopting positive coping strategies to learn to live with wet AMD.

Working through the stages of grief and loss, to eventually arrive at acceptance, involves understanding each stage and how your life is impacted. Working with a professional therapist or counselor may help a person better understand and process the emotions associated with the stages of grief and loss.

It’s important to note that no one goes through each stage exactly the same. When a person initially learns about a diagnosis, such as wet AMD, some will skip a stage, move through a stage (only to return to that same issue, later in time) and/or start out at a stage that may usually surface later (such as depression), as soon as the initial diagnosis is announced.

Many people skip around through each of the stages, re-visiting one or more, before finally coming to a place of acceptance. As a person begins to understand how each stage will impact them, the ability to face fears and move forward usually comes more easily.

There's no right or wrong way to grieve a loss (such as the loss or perceived loss of one's vision). It's important to allow yourself to feel what you feel, express your feelings and be where ever you are on the spectrum of the stages (from denial, through acceptance).

Keep in mind that you are not alone; according to the CDC, "As of 2012, 4.2 million Americans aged 40 years and older suffer from uncorrectable vision impairment, out of which 1.02 million who are blind." This is where support groups can really make a difference. Reaching out to connect with others who are going through similar experiences can help.

Asking for support can be a lifesaver for when you feel that you are drowning alone in all of the challenges involved in dealing with a condition that can cause vision loss.

Physical

Changing your lifestyle, such as your eating habits, are a good way to promote eye health, while lending itself to feeling stronger overall. A diet rich in antioxidants is recommended for people with AMD.

Social

Many people with vision loss continue to live a full, rewarding life. There’s no reason to stop enjoying some of the hobbies and activities you love. Getting involved in volunteer work, such as helping others with vision loss, can make a difference for those who feel their life is void of meaning or purpose.

Support Groups

One of the most effective ways to cope with the many challenges of having a disorder that impacts a person’s vision is to attend a support meeting on a regular basis. The group should be comprised of peers who are experiencing the same, or similar circumstances, in other words, those who also have a condition that impairs the vision.

Support groups allow people to address many aspects of living with wet AMD, including:

• Interacting and socializing with others
• Sharing common concerns
• Expressing emotions (such as anger)
• Working through grief (by expressing feelings in a supportive environment)
• Sharing experiences
• Giving and getting tips on coping, overcoming obstacles, finding resources, and more.

Getting involved in a support group may be the most vital aspect of coping with vision loss and caring for yourself after a diagnosis of wet AMD. Talking to others who have overcome some of the challenges you are going through can help you sidestep some of the difficulties involved in trying to figure things out. Why re-invent the wheel as they say?

Not only can a group of peers help you with the practical aspect of coping with wet AMD, the group can also keep you engaged in regular social interaction. This can help to combat depression.

Studies have shown that people who are socially isolated have an increased risk of depression. In fact, according to a 2015 study, lack of social connection presents a two-fold increase in risks of impaired physical and mental health.

Caregivers, spouses and other family members can also benefit greatly from joining and participating in a support group made up of other caregivers.

Practical

There are many strategies available to help people with conditions that impair the vision stay independent, no matter what level of vision loss you are experiencing. Many of these programs are suggested by the American Foundation for the Blind.

Depending on the level of vision impairment you have, these include tools to help people with vision impairment continue to independently perform activities of daily living, such as:

• Cooking
• Paying bills
• Navigating in the home
• Performing other essential tasks

These products include computers and software programs, simple tools (such as money counters and clothes organizers) home appliances, and many other adaptations. Aurora of Central New York Inc. also has a list of various sources that sell adaptive tools and appliances for people with vision loss.

Screen Magnification Programs

Depending on the severity of your visual impairment, you may require a program designed for those who have some sight (such as screen magnification software programs).

These programs offer features (such as the choice of color and layout) that are built into the operating system, or into the browser, to improve the visibility of a web page. Being able to select the color or layout of a page is said to greatly enhance the user experience for those with low vision.

The American Foundation for the Blind lists available screen magnification programs and describes how they work.

Screen Readers

Some people require a person to read the content on the screen to them, due to the severity of vision loss they are experiencing. This is where the next level of technology comes in.

Screen readers are software programs designed to interpret what is on the computer screen and then read the content on the web page aloud. This enables a person with vision impairment to be more independent on a day to day basis, able to access online resources (such as educational websites, support networks, and tools for daily living).

The American Foundation for the Blind has a detailed explanation of screen readers, as well as a list of available products. They also have more information about using a computer when visually impaired.

Employment

You don’t necessarily have to quit your career because you have wet AMD. There are options for people to use modern technology with some adaptations; many people with visual impairment are able to continue working.

Career Connect has information on careers for those with vision loss, including a list of jobs that are available as well as tools to support you in your job search.