We work diligently to share the latest developments on eye disease and eye health through our newsletters and online media, providing up-to-date information on age-related macular degeneration (AMD) and keratoconus (KC), their treatments and ways to help deal with the diseases. In this newsletter, we are exploring a separate, though related, issue that affects many people dealing with debilitating eye disease: depression.
?I have heard psychologists talks about the classic K?bler-Ross stages of loss and grief in conjunction with losing your vision: It?s like a death,? says Judi Delgado, director of the Macular Degeneration Partnership (MDP). ?It?s good to acknowledge this is a major blow. It makes sense that people would have to work through the process of grieving for the way they lived their lives before.?
Delgado and Catherine Warren, director of the National Keratoconus Foundation (NKCF), regularly get calls to their toll-free help lines from people experiencing sadness, depression and despair related to their disease. ?People call in tears all the time,? Warren says. ?They say: ?I?m at my wit?s end. I can?t go on like this. My life is miserable.??
A psychologist in Missouri, Dr. Roger Davis experienced depression firsthand following LASIK surgery, when he dealt with severe dry eye and ghosting ? and the denial of their existence by his surgeon. ?Anything that affects vision is going to affect mood tremendously,? Davis says. ?Vision quality and quality of life are in a lockstep pattern.?
?These are chronic diseases,? Warren says. ?Most patients go through at least a stage of being depressed, upset, anxious, worried. Not everyone realizes the emotional toll KC and AMD take.?
AMD
?When newly diagnosed people call MDP and say, ?I shouldn?t be depressed,? I say: ?You?ve lost a major part of your vision. It?s a blow; you haven?t connected yet with resources or support. Of course you?re depressed!?? Delgado says. She believes the most important thing is to acknowledge those feelings of sadness and despair ? and to get help. ?People need to know they are not alone,? she says. ?There are people who have gone through this before who have forged a path others can follow.?
Dr. Kazuo Nihira is both a psychologist and a person with AMD (read his profile). ?Macular degeneration is a very threatening experience,? he says. ?I am constantly fighting depression. It?s common, and it?s a major problem for people with macular degeneration. The condition can be very isolating.?
Nihira points out it is this isolation that often leads to depression. In addition to making it difficult to go places, vision impairment may make people hesitant to participate in social activities they once enjoyed. ?I used to attend many professional meetings at UCLA, where I taught,? he says. ?But I hesitate now. Not being able to recognize a familiar face across the room ? or even across the table ? can be very embarrassing, so I often don?t go.?
Nihira suggests people find social outlets where they feel comfortable, such as a support group. He regularly attends the MDP support group in Beverly Hills. ?Everybody there has the same experience, so you can skip the initial social hesitation and go right into regular interactions,? he says. ?It?s a place where you can feel comfortable and not feel isolated.?
Depression can affect different people at different times. Many newly diagnosed people panic. Often, they are incorrectly told they are going to go blind (people with AMD maintain peripheral vision), and not knowing what will happen next overwhelms them. ?Others develop an immediate action plan to busily avoid the emotion and fear. The depression hits them later like a ton of bricks once the distraction of initial research and discovery is gone,? Delgado says.
Behavior Activation
A study looking at the high incidence of depression in people with AMD was released by the National Institutes of Health (NIH) this past July. It looked at the effects of a specific type of rehabilitation therapy and underscored the importance of staying engaged with what you already do.
According to the NIH: ?Activities that used to be fun and fulfilling may begin to seem burdensome or even impossible. With loss of the ability to drive and navigate unfamiliar places, it becomes easier to stay at home than to see friends or meet new people. All of this can take a toll on mental health, and past studies have found that as many as one-third of people with bilateral AMD develop clinical depression.?
The study tested an approach called ?behavior activation,? which involves helping people focus on activities they used to enjoy, recognize that the loss of those activities can lead to depression, and re-engage in those activities.
During the study, participants visited an optometrist and were prescribed low-vision devices. They were then split into two groups. One group received behavior-activation therapy from an occupational therapist; the control group did not receive this therapy. The study found that behavior activation reduced the risk of depression by 50 percent, compared with the control.
KC
A recent post on the NKCF Facebook page was chilling: ?If I commit suicide next week, this condition (KC) is responsible for it. I?m fed up with this. I can?t live my normal life.?
Warren was not surprised. ?People who have dealt with KC for a really long time get tired and worn down,? she says. ?After the initial diagnosis, patients may feel stunned and fearful. Then, when that sinks in, and they realize this is a long-term condition with no quick fix, they get depressed. They get depressed when they try contact lens after contact lens after contact lens, and they can?t tolerate them. Then if they do find a lens they can tolerate, they struggle with paying thousands of dollars ? usually not covered by insurance ? and they get depressed. Then six months later, they have to start again, because the shape of their cornea changed. It can break you.?
Like those with AMD, people with KC deal with limited vision, financial issues, and limitations on work and play. ?Plus, KC affects younger people, and it can affect every aspect of their lives, from career choices to family life,? Warren adds. ?If you can wear your contact lenses and get three hours of good vision a day, that?s great, except you can?t work an eight-hour day, then drive home and take care of your family on three hours of good vision a day.?
Like Nihira, Warren touts the importance of talking with other people who understand what you are going through. ?Ask your doctor to put you in touch with other patients,? she says. ?If there?s no support group in your area, start one (she has a how-to protocol for doing just that). The feeling of community can make a huge difference, even if it?s a virtual community, such as KC-Link.? NKCF?s KC-Link is a community of keratoconus patients, their families and physicians who talk to each other and provide mutual support.
?Be open with family members and friends,? Warren urges. ?Learn to ask for help, and allow people to help you. When someone says, ?What can I do?? Well, tell them what they can do.?
Signs and Steps
How do you know if you are depressed? ?The difference between sadness and depression is really a matter of intensity,? Dr. Davis says, and they manifest in different degrees for different people. Signs of depression include:
- Loss of interest or pleasure in things that previously interested you
- Lack of motivation
- Lack of energy
- Lack of concentration and/or creativity
- Feelings of helplessness and hopelessness
- Feelings of guilt and worthlessness
- Worry about the future
- Irritability
- Avoidance of social contact
If you are experiencing these signs, Davis suggests the following steps:
- Determine whether you are having suicidal thoughts. Suicidal thoughts need not be seriously entertained; they can take the form of fleeting impulses, but nonetheless, they are symptomatic of severe depression. If you find yourself planning to harm yourself, see a mental-health professional immediately.
- Make sure you are addressing the root cause of the problem: your vision issues. Whether it?s getting better-fitting contact lenses, considering medical procedures or something else, addressing your underlying physical issues helps deal with the depression they are causing.
- Educate yourself about the disease process. Uncertainty leads to worry, and worry leads to anxiety and depression. Being educated and having a plan helps restore a sense of control.
- Socialize more, not less. Don?t close yourself off from family and friends. Seek out a support group of people who have a similar problem and can provide emotional support, wisdom and knowledge. True empathy comes from other people who are going through or have gone through the same thing you are.
- Learn to help others. As you advance in your knowledge and coping skills, remember what it was like for you, and become a source of strength and support for others. Helping them get through will be extremely rewarding and provide a sense of satisfaction that would have been impossible if you had never been diagnosed.
Be sure to visit our blog regularly to read first-person accounts of people with eye disease dealing with depression and other issues.