[Editor's Note: This article may have been written for fibromyalgia patients, but it is pertinent to anyone with a chronic disease that involves chronic pain. July 7, 1999 - Sherron Stonecypher is a graduate student at Western Washington University. Her website was created to partially fulfill requirements for her Masters in Education degree. Although she is not a medical/health trained professional, she did an extensive review of literature in the areas of fibromyalgia, patient and family education, instructional design, and multimedia development in preparation for creating the "Fibromyalgia: Resources for Families" website.]

Fibromyalgia syndrome (FMS) is a chronic pain disorder that causes widespread pain, tenderness, and stiffness in muscles, as well as general fatigue.

When FMS Changes Everything

FIBROMYALGIA syndrome (FMS) can cause profound changes in the life of the person diagnosed, and the lives of family and friends. The changes may include loss of income, independence, good health, and future plans. Those affected by fibromyalgia often feel their hopes, dreams, and expectations have been broken.

Why Grieving Is Important

When faced with significant change and loss, the normal and natural reaction is grief [1]. According to John W. James and Russell Friedman, "Grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior." [2] For example, when a loved one is diagnosed with fibromyalgia, you may feel a sense of relief knowing the cause of the symptoms. This positive feeling can be coupled with the painful realization that the peaceful life you both once shared has been permanently altered. These conflicting feelings, relief and pain, are normal responses to fibromyalgia.

Regardless of whether grief is caused by illness, divorce, death, or another loss, incomplete recovery can have a lifelong negative impact on a person's capacity for happiness. Families affected by fibromyalgia need to recognize when loved ones are grieving, know how to support one another, and find a way to heal from grief. If families are unable to regain a sense of well-being, then over time, the pain of unresolved grief will cumulate [3].

Common Emotions Experienced When Grieving

In her book On Death and Dying [4], Dr. Elisabeth Kubler-Ross identified five emotional stages people go through after being diagnosed with a terminal illness. The stages she identified are shock, denial, anger, bargaining, and acceptance.

While Kubler-Ross' work highlighted awareness about the process of dying, people, both professionals and the general public have inappropriately attempted to apply Dr. Kubler-Ross' stages to the emotions that arise after loss. James and Friedman write, "There are no absolutes in grief. There are no reactions so universal that all, or even most, people will experience them." [5]

Circumstances and culture are factors that affect how people grieve [6]. When reacting to loss caused by FMS, it is possible for family and friends to share the same emotions, or not. For example, a person diagnosed with FMS may feel depressed from the loss of good health. On the other hand, the well spouse may experience anger and the extended family members may deny their loved one has a chronic illness. People simply do not experience grief in the same way [7].

Although grief does not occur in stages, James and Friedman acknowledge that many grievers do share common responses, such as:

• A sense of numbness
• Inability to concentrate
• Disrupted sleep patterns
• Changes in eating habits
• Feeling emotionally and physically drained

These are normal, natural responses to the loss FMS causes. The duration of these emotional responses differs from person to person and individuals may not experience all these responses. While recovering from their losses, it is important for family, friends, and the person diagnosed with fibromyalgia to grieve without following an expected timeline or stages. Recognizing that each individual emotionally reacts to loss in a unique way will make recovering from grief easier.

[Editor's Note: Dr. Rita Cowan, Ph.D. is a Psychologist and Registered Nurse who specializes in Health Psychology at The Falls Pain Management Center, Cuyahoga Falls General Hospital in Cuyahoga Falls, Ohio USA. This article has been reprinted with permission. For more information about chronic pain, visit "Chronic Pain Solutions" where this article appears.]

In working with people with chronic pain over the years, I have noticed that the emotional ups and downs they display are very similar to those of people who have suffered a death or significant loss. It is no wonder that many chronic pain sufferers display a grief response to their pain. Professionals who assist people in coping with grief are aware of certain stages that these individuals proceed through as they begin the healing process after a loss. The five stages of the grieving process appear to apply well to chronic pain sufferers.

If you are a person who suffers with chronic pain, or know someone who does, think about these stages and consider if you have or are experiencing any of them.

The first stage is Denial and Isolation. When people learn or realize that they will be living with chronic pain the remainder of their lives they often may deny it. "This can't be happening." "The doctor is wrong." "This pain will surely go away, they just haven't found out what to do." Denial is a normal initial response to loss. We want to believe that it is not happening. We often feel very alone in this stage.

The second stage of grief is Anger. "How can this be happening to me?" "The stupid doctors messed me up!" There may be actual anger outbursts, often directed at the health care providers, family, or self. Many people with chronic pain are filled with rage over the substantial changes in their lives. Although this is a normal response to loss, when people get stuck here they create more stress which increases their pain. They may behave in a manner that isolates others more, which results, in more anger.

The third stage is Bargaining. Here the person makes "deals" with God, or believes that if they are "real good" this curse of chronic pain will go away.

Depression is the fourth stage of Grief. This emotion occurs when the individual begins to realize that they cannot bargain, that anger is counterproductive and that they certainly can't deny what they are physically and emotionally experiencing. There are very few chronic pain patients that I have worked with who do not have a degree of depression. How could they not?

The fifth and final stage is Acceptance. At this point the person is not resigned to their life with chronic pain. Rather, they have realized that things are different and by accepting, not becoming their pain, they can obtain some control over their pain and their lives.

Each person experiencing the grieving process will go through these stages. Some stay stuck, and some move quickly through to acceptance. Each person is unique in their response, therefore there is no "right" way of grieving the losses endured with chronic pain. This too is normal. Psychologists and other health care providers are trained to help chronic pain sufferers identify and cope with the special circumstances involved in each stage. Our goal is to help people gain acceptance so they can begin to take back their lives -- managing their chronic pain and not losing themselves to it.

[Editor's Note: This article provides a good overview of depression and chronic illness. It does not, however, clearly explain that in some diseases like sarcoidosis, depression is can be an actual part of the disease. The depression may be present before the person is even aware of being ill. Thus, the argument that depression is a medical problem possibly caused by a chemical imbalance, rather than just an emotional problem, seems valid.]

Depression is one of the most common -- and potentially dangerous -- complications of every chronic illness. According to one survey, it is particularly common in those with: recent heart attacks (45%), hospitalized cancer patients (42%), recent stroke survivors (40%), and people with multiple sclerosis (40%), Parkinson's disease (40%), and diabetes (33%).

According to depression specialist Arthur Rifkin, M.D., a psychiatrist at Albert Einstein Medical Center in New York, the most common misconception about depression and chronic illness is that it's understandable to become depressed when faced with a chronic illness. It is understandable -- but only during the initial adjustment period that should not last for more than a few months. Beyond that, persistent depression should be treated as a separate illness.

For centuries physicians have noticed that chronic disease and depression frequently go hand-in-hand. As early as 1684, Dr. Thomas Willis wrote of the "sadness, or long sorrow" that accompanies many chronic illnesses.

Today we know that the link between depression and chronic illness is a two-way street. Chronic illnesses are depressing. And the depression they cause often exacerbates the illness.

Many surveys show how depressing it is to have a chronic illness. In the general population, the lifetime risk of depression is 10% to 25% for women and 5% to 12% for men. However, the prevalence of depression in those with chronic illnesses is much higher -- 25% to 33%.

Any chronic condition can trigger depression, but risk increases in direct proportion to the severity of the illness and the life disruption it causes. A broken leg that makes you miss a family reunion is a drag. But a car accident that leaves you paraplegic can be severely depressing. Risk of depression also increases with the possible complications of a chronic illness. People with diabetes can manage the illness so that they live normal-looking lives. But diabetes can cause so many possible complications -- among them, heart disease, blindness, kidney failure, and sex problems -- that even diabetics who are in control of the disease have an unusually high rate of depression.

In addition, the depression caused by chronic illnesses often aggravates the illness, especially if the condition causes pain, fatigue, or disruption of social life. Depression makes pain hurt more. It causes fatigue and lethargy that can exacerbate the loss of energy of many chronic conditions. And depression aggravates social disruption because it tends to make people withdraw into social isolation.

Depression's aggravation of chronic illness can be fatal. Duke University researchers tested 730 men and women for depression several times over a period of 27 years. Compared with participants who were not depressed, those who experienced major depressive episodes were 59% more likely to die of all causes, and 71% more likely to succumb to heart attack.

Furthermore, the presence of chronic illness may affect the dosing requirements of antidepressants. It may also place people at a greater risk for experiencing potential adverse effects. It is very important that the dose of the drug is adjusted accordingly.

Finally, depression impairs the immune system, which can hurt the body's efforts to combat chronic illness. In one study, 42 young adults had blood tests that evaluated their immune function. Half were depressed, half were not. Compared with the normal participants, the depressed group showed significant immune impairment.

You may have to live with your chronic illness. But you don't have to live with depression. Depression is treatable. One frequent benefit of getting your depression treated is that, once your mood has brightened, your chronic illness often becomes easier to endure and manage.

Selected Sources:

• Barefoot, J.C. and M. Scholl. "Symptoms of Depression, Acute Myocardial Infarction, and Total Mortality in a Community Sample," Circulation (1996) 93:1976.
• Rifkin, A. "Depression in Physically Ill Patients," Postgraduate Medicine (9-92) 147-154.
• Schleifer, SJ et al. "Immunity in Young Adults with Major Depressive Disorder," American Journal of Psychiatry (1996) 153:477.