March/April 1996

DEALING WITH CHRONIC ILLNESS--A FAMILY CONCERN

Twenty-one million people in the United States suffer from some type of chronic disease. Multiple sclerosis, Parkinson's disease, severe lung disease, diabetes, stroke, and arthritis (including lupus and rheumatoid arthritis) are all chronic illnesses. Emphysema and asthma may also be chronic.

These and other diseases make permanent changes in how life is lived. Although any illness is challenging, most patients expect to recover fully and resume life as it was before their illness.

But chronic illness is always present. It is a constant companion both for those personally affected and for their families. In spite of this reality, a person with chronic illness can still live a full, meaningful life.

Reactions to diagnosis

Facing a chronic illness creates strong emotions--shock, anger, and fear--that must be recognized and worked through. Over time, though, those affected can usually begin to deal with these normal reactions.

Depression and grief over losses of self-image, options, and abilities are also common. Unresolved grief that leads to depression will usually respond to medication or therapy. In general, however, the key to coping with these emotions is to accept them and express them as they occur.

When symptoms are elusive, the uncertainty of not knowing what is wrong can be an ordeal for everyone. After diagnosis, the patient and family can begin to deal with their feelings and take an active role in managing the illness and its symptoms.

Doctor-patient relationship

Developing a partnership with the doctor is crucial. Personal circumstances that will affect treatment must be discussed. Asking your doctor questions also increases understanding of the illness, its prognosis, and any treatment options.

It can be helpful to take notes or tape-record meetings with the doctor. To be informed about and involved in treatment decisions, patients and families should ask questions to clarify information provided by the doctor.

Honesty can also help build a good doctor-patient relationship. Patients should tell their doctor about what they can and cannot do, as well as what aspects of treatment are--or are not--working.

Changing roles

Within the family, changes in primary relationships usually occur as a result of the illness. Children, in particular, may feel frightened or upset by a parent's illness. To help them cope, family communication should be open and honest.

Assistance may be necessary for everyday activities, or to fulfill one's role as a spouse, parent, worker, and friend. Still, being dependent on others can be handled in an emotionally appropriate manner. Patterns of giving and taking can be adjusted. Those faced with a chronic illness should feel free to ask for--and to receive--any necessary help.

Since many people enjoy helping others, "doing something" for the chronically ill person can make family members and friends alike feel needed. But not being able to help out on occasion should not engender guilt; it does not indicate a lack of concern.

Marital relationships

The spouse of a chronically ill person will also experience major life changes and may need counseling to help handle the stress. As with the patient, the spouse can benefit from learning more about the illness and how to cope with it. It can also be helpful to schedule time away, to learn to verbalize feelings, and to explore opportunities for satisfying personal needs.

Chronic illness will not destroy the family's relationships, but it will shift the balance among them. Individual family members adjust in different ways, and often at different paces. Some may need to talk openly about the illness, while others require time alone.

External supports

Community resources and professionals can also offer help and support to both the chronically ill person and the family. Resources may include health care providers, organizations such as Meals on Wheels, religious institutions, professional caregivers, and support groups. Neighbors and extended relatives may also be of assistance.

Overall, though, perhaps the most important factors in coming to terms with a chronic illness are the openness and support provided both by professional caregivers and by family members. Such supportive relationships are a key component of successful day-to-day living with chronic illness.

Source: THE MENNINGER LETTER, Vol. 3, No. 6, June 1995

TRAUMA ALSO AFFECTS FRIENDS AND FAMILY

Traumatic events involve threat of death or serious injury and evoke feelings of helplessness, fear, or horror. The long-range impact of trauma depends not only on the nature and severity of the traumatic events.

It also depends on the traumatized individual's temperament and coping abilities, as well as on the personal meaning of the events. With good social support, many persons come through trauma without serious or persistent impairment of functioning.

Those who undergo severe or prolonged trauma, however, are at risk of developing posttraumatic stress disorder (PTSD). The core symptoms of PTSD are anxiety, reexperiencing the trauma (intrusive memories, flashbacks, nightmares), and defending against feeling overwhelmed by trying to avoid reminders of the trauma and be becoming emotionally numb.

Proximity to the traumatic event is an important contributor to the risk of posttraumatic symptoms. The closer you are to the volcanic eruption, the shooting, or the bomb blast, for example, the more you will be affected.

It can also be traumatic just to learn about or hear about the traumatic experience of someone you are close to. This form of indirect exposure to trauma can produce symptoms of PTSD even when you did not directly witness the traumatic event.

Charles Figley, a psychologist who is a prominent expert on trauma, has recognized the significance of compassion stress as part of the "cost of caring" for persons who have suffered trauma. Professionals have a clear prescription for those who have undergone trauma: Talk about it. But what are the effects on those who listen?

One effect is exposure to traumatic experience--indirect exposure to traumatic events and direct exposure to intense emotional suffering. But another effect runs deeper. Helpful listening requires empathy, which requires identification with the sufferer--putting yourself in his or her shoes. Identification entails having feelings like those of the sufferer, and perhaps imagining what the sufferer went through by picturing it in your own mind.

Having done this, you may find yourself immersed in painful feelings (fear, outrage, despair). You may even begin to have intrusive thoughts, memories, or images related to the trauma. Some caregivers might even experience traumatic nightmares similar to those of the survivor.

Figley points out that compassion stress is an inevitable consequence of caring for someone who has been traumatized. Compassion stress is painful but usually temporary. Still, it can evolve into compassion fatigue, a reaction that can impair your own functioning.

Compassion fatigue is a state of exhaustion accompanied by symptoms parallel to those of PTSD (anxiety, reexperiencing the trauma, avoidance, and numbing). Figley identifies two factors that can prevent compassion stress from turning into compassion fatigue:

* the feeling of achievement associated with helping to relieve the victim's suffering, and

* the ability to maintain sufficient emotional and psychological distance from the sufferer.

Of course, the closer you feel to the sufferer, the harder it will be to maintain this distance. As I see it, empathy always requires a delicate balance between emotional involvement and detachment. And it is all too easy to go from one extreme to the other.

If you are struggling with compassion stress in relation to someone you are close to, you may tell yourself, "It didn't happen to me, so I have no reason to feel so distressed." But minimizing the effects of caring may be detrimental in the long run.

Instead you should take seriously the stress associated with your compassion. Like the trauma survivor, you need to talk about it. Like the trauma survivor, you need social support.

Source: Jon G. Allen, Ph.D., THE MENNINGER LETTER, Vol. 3, No. 12, December 1995