People with Age-related Macular Degeneration commonly face a bout of depression in the first few months after their diagnosis. In this article, written for the AMDF by psychiatrist Arnold Wyse, M.D., depression is described as a natural process of working through the issues of AMD. Wyse gives reassuring guidelines for understanding that process and for gauging when help is necessary.
DEPRESSION IN PEOPLE WITH MACULAR DEGENERATION
The depressive response is accompanied by a set of typical physiological and emotional symptoms.
Its adaptive function is to signal to ourselves that there is an important problem that requires attention and resolution.
By Arnold Wyse, MD
In preparation for this brief attempt to write something about depression that would be relevant and meaningful to individuals experiencing the visual acuity loss associated with macular degeneration, I tried to place myself directly in the shoes of one who has experienced such loss. Quickly, however, I sensed that losing a big part of such a crucial and taken-for-granted way of experiencing and relating to the world was virtually impossible for me to truly “know” from “inside.” Perhaps to experience such a loss, even within the safety of my imagination, was simply too threatening and might trigger my own painful and depressing “crisis of the self.”
What did get triggered at a “gut level” in this attempt at placing myself within the experience of you who know only too well what really having macular degeneration is like, was a wave of fear coursing through my body and soul – an old fear which we know now, from research, is a specific fear shared by more people than any other fear associated with losing one of our five senses – the fear of losing contact with the world through loss of sight. In re-exposing this usually suppressed fear within myself, I finally was able to come close to my original goal of empathy with macular degeneration’s victims.
The first paragraph contains a phrase which I believe is key to any discussion about depression from whatever precipitating cause including macular degeneration, namely, “crisis of the self.” In fact, “depression” from both a layman’s perspective and a psychiatric/clinical viewpoint can probably most usefully be defined as an unresolved crisis in the sense (image) of, security of, and esteem of one’s self.
Let me digress a moment to acknowledge that as a psychiatrist, I am naturally aware of the currently prevailing professional and lay literature promoting a view of depression as a genetic disorder of chemical imbalance which a person “gets” or “has” like one “gets” pneumonia or “has” diabetes or any number of other “diseases” and “illnesses.” This interesting, but unproved theory and literature seems partly based on the motivation to lift “blame” or concerns about personal “weakness” from depressed individuals or to bestow a medical/physical aura to what is basically emotional/psychological/spiritual suffering. It is based on recent research that has identified information transmitting chemicals in the brain that are involved in people’s various emotional experiences and which anti-depressant medication can often impact to improve the mood of some depressed individuals.
Cause and effect has often been poorly understood in this research. Increasingly, it is recognized that the changes (“imbalances”) in brain chemistry associated with depression, to the degree they exist at all, are primarily a result, not the cause, of the mood and thought changes inherent in the unresolved “self in crisis” (much as salty liquid discharges from the eyes (tears!) are the result, not the cause, of acute sadness or happiness).
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As one who has worked in psychotherapy with many mildly and severely depressed individuals (frequently without utilizing anti-depressant medication), I can attest to the significance of loss, in all its many manifestations, and the consequent emotional and thinking crises, fears, conflicts, and disruptions in sense of security, as the main cause of most, though perhaps not all, of the painful emotional and mental experience we call depression. Certainly, concepts such as blame, weakness, failure, badness, etc., have no place in any meaningful understanding of depression although they are almost inevitable factors in the experience of the self-in-crisis.
Another truth about depression that needs emphasis is that it is not “pathological” per se. This is related to the points made above. In fact, it is better viewed of as a normal, natural, “built-in” mental/emotional/physiological response of a person which serves primarily a signaling and curative function (analogous, for instance, to fever in some physical illnesses).
To use macular degeneration as an example, when a person begins to experience the changes in central visual acuity, depth perception, contrast sensitivity, and glare sensitivity associated with the onset of macular degeneration, there follows an initial reaction of worry, concern, and perhaps anxiety which leads one to seek a medical evaluation, diagnosis and (the usually expected) correction. When the unexpected and devastating diagnosis of macular degeneration comes, one’s world is suddenly topsy turvy (unless the psychological defense of total denial sets in to avoid emotional pain and protect the familiar self-image and sense of security). Even the sympathetic and encouraging words of a caring physician who understands both the limitations and continuities of sight that you may experience now and in the future, can often not be heard and emotionally processed at the moment of diagnosis. Your perception of yourself, and vision of your future is thrown into total disarray; you despairingly imagine a life of darkness, social isolation, dependency, risky treatments, loss of friends, hobbies, participation in activities of interest such as sports, theater, art and reading – in short, a kind of early death.
Before macular degeneration, you had already successfully made it through the crises of changes in self-image that occur in middle to later years of life and accepted the eventual, but still in some respects distant, inevitability of physical decline. But now this hits with all the same issues, only in spades, and with an immediacy that makes the present, and especially the future, seem very “dim” indeed. “Loss” (especially of control, mastery, and independence) seems the dominant factor in your life, your old self image and assumptions are out the window, your secure world tumbles like a house of cards, and your self-esteem begins to crumble with it.
All permanent challenge or loss that we suffer in our view of ourselves and our world, especially as it relates to our future, includes the above experiences to greater or lesser degree. In general, the more sudden our awareness of the loss, and the more it threatens contact with that which is most meaningful, the more traumatic and disruptive the experience.
For no one is the experience painless – it always hurts – but for some the crisis will be more temporary than for others. This depends on many factors such as their interpersonal support network, previous experience in mastery of severe loss, general emotional resilience (possibly partially related to built in “temperament” factors), the degree of acceptance and ability to express to others their grief, anger, and fear, and the directness to which the loss is related to the core of their self identity and esteem.
For many, the process of readjustment and re-establishment of their self esteem, security and positive “picture” of themselves, as well as the struggle to re-involve themselves in previously meaningful activities, or to learn new ones, will take longer. During this phase they may be said to be “depressed” in the sense of having less interest in usual activities, lower energy, some social withdrawal, some loss of usual appetite and restful sleep, some irritability and easy frustration with others and themselves, some self pity, periods of despair, and, of course, considerable sadness and tears. However, the good news is that this is not truly a state of illness, or malfunction. Such depression is the “heart,” mind and body’s sad and slowed down response to a traumatic crisis demanding new adaptation which requires much time and opportunity (some of which includes a need for aloneness, more wakefulness, and less food intake) for a great deal of thought about past, present and future, and the processing of many feelings which must “have their day.” The fact, however, that this process is a natural and potentially curative one does not mean that family, friends, macular degeneration support groups, or professional therapists should not be a part of it.
One of the great fears and initial expectations during this “re-grouping” process is that one is totally alone with this sight loss and that the loss will include separation from meaningful and loved people. Including such people in the expression of the loss and in the readjustment process is inherent in the optimal healing function of this level of depression. (It is most helpful, of course, if the “significant others” in this process do not discount, denigrate, or push for quick change in the periods of withdrawal, range of emotions expressed, and changes in physiological functions or habits through which the person-in-crisis is going.)
Depression, though a natural and potentially productive, even curative, response (or signal) to persons in need of re-alignment of their self identity, image, security, and esteem, can, and sometimes does, like a fever, progress to the point of diminished returns and become unproductive and, itself, debilitating. Nevertheless, even then it should still be considered as a natural and potentially productive signal or message from oneself to oneself that further work and re-adaptation is necessary. However, if the individual is unable, for whatever reason, to hear or respond to that message, and slips into a malignant spiral of increasing self-incrimination, social avoidance, despair, hopelessness, loss of weight, loss of adequate rest, or suicidal preoccupation, then psychotherapy along with anti-depressant medication, and even occasionally self-protective brief hospitalization, is indicated and may become life saving.
The goal, however, even in the more extreme situation, is not just a return to a previous level of functioning, but a renewal process of personal growth that will enable the individual to achieve greater and richer experiences of meaning, self-esteem, relationships with others, and ability to cope with life’s stresses than had been the case prior to the traumatic loss experience of macular degeneration.
On that latter point, I have to think of a friend who actually is now able to express gratitude for the depression and subsequent life re-examination he was forced to undergo as a result of the onset of macular degeneration many years ago. Although he would not wish such an eye problem on anyone, he is keenly aware that, for him, it may have been the kind of loss and trauma that was needed for him to finally examine his then self-destructive life course and to gain the insight and personal healing necessary to find a life of meaning, self-esteem, family relatedness, and service to others which he subsequently accomplished. Although he could no longer see people and objects outside of himself with as much visual clarity, he gained an ability to see both them and himself with a clarity of reality, respect, and optimism heretofore absent from his “sight.”
No longer a helpless and bitter victim, he became a healing facilitator for others. He had heard his own healing potential calling from the depth of his loss, grief, anger and depression.
In summary, I have attempted to share some thoughts on the near inevitability of greater or lesser degrees of depression as a result of being given a diagnosis of macular degeneration and a way of viewing and understanding depression that emphasizes its potentially productive meaning for us as a normal reaction to difficult life circumstances, and a useful “first alert” to get help toward a better life.
Further Thoughts on Depression in People with Macular Degeneration
By Arnold Wyse, MD
Above, I discussed depression, including in people with macular degeneration, as a basic, normal, and potentially adaptive response whenever we perceive that a significant physical, psychological, or interpersonal effort of ours is failing in its purpose or coming to a halt.
This depressive response is accompanied by a set of typical physiological and emotional symptoms. Its adaptive functionis to signal ourselves that there is an important problem that requires attention and resolution. Depression aids and protects concentration on the emotional and thinking readjustment that needs to be done to alter or cope with the situation or to recognize and accept a situation that cannot be changed. The potential result is renewal of one’s self-esteem and a greater capacity to move forward in life on the basis of new, even if deeply unwanted, realities.
I will now respond to some questions that your editors have asked regarding depression in general, and as it relates to people with macular degeneration.
Is it possible for depression to make our visual problems worse?
There is no evidence that depression can worsen the physiological and histological changes of macular degeneration. However, to the degree that depression temporarily narrows our attention, interest and involvement in the world around us, we might perceive a worsening in our visual acuity and sensitivity. An analogy would be the difference in brightness and color we experience in our surroundings when we are in a “bright” mood versus the dull or gray appearance that even a beautiful day may have to one who is “blue.” However, this will be transient and when the “work of depression” has been accomplished, there will be no permanent physical effects from this perceived worsening of vision.
How long will a person be depressed and is there any way of predicting this?
For the most part, depressive responses arising from unexpected traumatic circumstances such as macular degeneration are relatively short in duration, perhaps a few weeks to a few months. The only way I know of predicting just how brief or long any particular individual is likely to experience depression is to look at his/her previous record in coping with the stresses of life.
Speaking generally, people who have enjoyed a previous high level of self esteem, emotional resilience in the face of adversity, high levels of support from, and contact with, family and friends, etc., will show a quicker rebound from the initial devastating impact of their visual impairment. Those who, for whatever reason, have been more depression prone in the past and who are more dependent on everything in their life being “ideal” for their sense of their own self worth and stability may take a longer time to hear and respond to the growth-demands inherent in their depression. Although we all feel good vision as very important to our lives, the degree to which visual acuity is central to one’s career or hobbies can also affect the amount of personal threat one feels when faced with its complete or partial loss. It is important to remember that, for most people most of the time, depression is a time-limited experience with spontaneous recovery the rule.
Is there anything you can advise a person to do, or take, that may alleviate their depression?
Most of us are not especially open to advice when we are in the depths of depression or despair. Usually we simply have to go through a healing process either alone, with the help of friends and family, or with the help of a therapist. However, there are some suggestions that can be made that might be helpful for some. Acknowledge and accept the depressive feelings as real, true, natural, and as a signal of some personal adjustment and healing which needs to take place. Avoid the trap of thinking that your current emotional suffering, anger, and disinterest in life is a sign of personal weakness, badness or failure. Accept it as a sign that the former path in life you were on may no longer go anywhere for you and a somewhat new path must be found. Find a trusted friend or family member with whom to share your feelings about your loss and ask them primarily just to listen and care, not to give you lots of advice or try to push you to feel better until you have gone through your own process of acceptance and adjustment. Don’t be quick to pop every little pill or potion in your mouth that others say was a miracle cure for them! Keep up as many of your daily routines as possible and take good care of your body and spirit through daily exercise to the degree that you can feel motivated to do so.
Are there any over-the-counter vitamins or drugs that a person with depression could take that might help? Or would they need a prescription?
In general, look not for help and healing through the oral and digestive system, but through the psychological/interpersonal system. Your “soul” has been wounded by loss in a personal sensory function that had tremendous value to your sense of your self and your contact with life. Such “soul wound” heals with a combination of time, painful acceptance of what has happened, healing contact with people who care and try to understand, and gradual investment of time and energy in what can still be for you, rather than what can no longer be. This is an internal psychological process, not an oral or chemical process.
However, the process can be supported through continuing good nutrition (including vitamin supplements if one’s loss of appetite diminishes good nutrition), regular physical exercise, and sometimes even prescription anti-depressant medications. The latter, prescribed by a psychiatrist or your family physician, can for some people assist in re-establishing the balance and function of neurochemicals in the brain that have functioned less effectively as a result of prolonged emotional/psychological depression. They will not, however, be needed for most people dealing with depression in response to a life stress or trauma and should be seen as adjunctive (added to), rather than central, to the healing of the “soul wound.”
What can family and friends do to help alleviate the depression?
Like the victim of macular degeneration themselves, family and friends can help most by not being alarmed at the initial depressive response but to recognize that this response creates, by its various reactions, a frame of mind and a physical state promoting the work of re-adaptation and regrouping. A caring and understanding ear should be offered rather than impatience at the individuals temporary withdrawal, loss of appetite and sleep, sadness and anger.
Working creatively together with the victim of macular degeneration to find treatment where indicated, and to find ways to support what vision the individual has as well as to compensate for what is lost will be helpful. The victim’s need for maximum independence in the face of greater dependence in certain ways should be recognized and supported.
If the depression remains deep and unproductive for weeks on end or includes unrelenting suicidal thoughts, wishes, or behavior, a friend or family member should firmly press for professional help for the depressed person.
At what point should the AMD patient seek professional help?
In most cases this won’t be necessary as the potential for “recovery” is present in everyone, especially where solid interpersonal relationships exist prior to the onset of the macular degeneration. However, sometimes the traumatic situation and resulting depression or anxiety, including preoccupation with death and suicide, becomes so overwhelming and protracted that professional help is indicated. To seek such help when the frame of mind and physical reactions of depression have not spontaneously remitted is a sign of strength, not weakness.
Often, the very decision to get professional help or the first meeting with a professional expert who is experienced in helping people work through their loss and regain their interest and enthusiasm for life will already lead to relief from the worst feelings of hopelessness and despair. Generally speaking, it is better to be sooner rather than later in obtaining professional help as it becomes harder for most people to seek such help when their depression becomes severe and unproductive to the point of feelings of hopelessness and despair about future possibilities for meaning and happiness.
What professional options are available to the patient? What are some benefits and drawbacks to each option?
If one has an ophthalmologist or family physician who is sensitive to the emotional experiences the patient is likely to go through who has just been diagnosed with macular degeneration, that physician can help a great deal by spending time listening about and discussing those typical emotional responses. Frequently, that is all the professional help that is needed. In addition, an ophthalmologist or family doctor who is experienced and judicious in the use of anti-depressant medications may prescribe them when indicated.
If more intensive psychotherapy is indicated however, the patient should seek the assistance of a clinical social worker, psychologist, or psychiatrist who is trained and experienced in the special skills that good listening/interactive psychotherapy requires.
The current managed health care environment makes obtaining such psychotherapy over an extended time much less available to the average person, especially if done with a psychiatrist, but just pills or a session or two of advice will often be insufficient to help the person regain optimal psychological growth and health from their traumatic loss. A psychiatrist who is trained and experienced in psychotherapy offers the added benefit of being an expert on psycho-pharmacology, but many other mental health professionals are also highly skilled in offering individual, group, or family therapy. In some locations, the patient may also find excellent self-help groups led by either a professional or a skilled lay person who him/herself has experienced macular degeneration.
Are there any good books or articles on depression that one might read?
Although depression is such a natural, common and universal response to unresolved loss or stress, it is also very unique in some respects for each individual because each person is unique. Therefore, I am not fond of recommending reading in the field for the person currently suffering the loss of traumas such as macular degeneration. The path of recovery will come, not from books and articles, but from one’s own inner process, relationship with significant others, and, where indicated, a caring and skilled professional. For readers of this article who are interested in reading an excellent book written for professionals and educated laypersons, I would suggest Productive and Unproductive Depression, Success or Failure of a Vital Process by Emmy Gut, Basic Books, Inc., New York.
Brief Biographical Sketch
Dr Arnold Wyse, a native of Michigan, is a board-certified psychiatrist and psychoanalyst who received his specialty training at The Institute of Living in Hartford, Connecticut, and at New York Medical College in New York City. After twenty years in private practice in Hartford and as Associate Clinical Professor at both the University of Connecticut School of Medicine and New York Medical College, Arnie joined the Indian Health Service. From 1992 until 2000, Dr Wyse served as Director of Mental Health Services and Medical Director at Northern Navajo Medical Center in Shiprock, New Mexico.