It is easy to see how tempers can flare at the slightest provocation. The combination of unrelieved suffering on the one hand and constant stress and fatigue on the other can be highly volatile, even among the most loving couples — whose burdens are often worsened by a decline of intimacy.
“Family members are rarely considered by doctors who treat pain,” said Dennis C. Turk, a pain management researcher at the University of Washington in Seattle. “Yet a study we did found that family members were up to four times more depressed than the patients.”
But pain experts say there is much that family members and friends can do to improve the situation.
Step one is to recognize that chronic pain is not an individual problem. Let the patient know that you are in this together and will fight it together. When the patient is moody and irritable, try not to take it personally.
Step two involves learning as much as you can about the condition and how to treat it. Eliminating the pain may not be possible, but there often ways to reduce it. (See next week’s column on treating chronic pain.)
Some of the ideas below were adapted from the American Chronic Pain Association’s Family Manual, written by Penney Cowan, the association’s founder and executive director.
“Twenty-five percent of the calls we get are from family members looking for help,” Ms. Cowan said in an interview last week. “Family members are just as isolated, controlled, frustrated, guilt-ridden and confused by chronic pain as is the person in pain.”
Acknowledge your feelings. You may feel guilty about not being able to relieve the distress of someone you love. You may be anxious about financial problems.
You may be distressed by the reactions of other people, who might lack an understanding of chronic pain and suggest that the patient is malingering — faking the pain to avoid work or family responsibilities. At a time when you most need the understanding and support of others, they may seem unsympathetic, even hostile.
But the most common reaction is resentment, over a withdrawal of the patient’s affection and sexual intimacy, the unending care required by the patient, the need to add the patient’s responsibilities to your own, the decline or loss of a social life and time spent with friends. You may resent having to abandon an enjoyable lifestyle or plans for the future.
If the patient was the family breadwinner and is now unable to work, you may have to find a job and, at the same time, do most or all of the chores at home and care for the patient. Chronic exhaustion can erode your temper as well as your own health.
It is all too easy to react to such feelings in emotionally destructive ways. Owning up to them can help you cope more successfully.
Help the patient stay involved. Chronic pain can rob people of their abilities and force them to be cared for by others, leaving them to feel worthless and guilty over not contributing to the family’s welfare. Whether you are the patient’s primary or intermittent caregiver, it is important not to contribute to feelings of helplessness.
Encourage patients to participate as fully as possible in family plans and activities, household chores, discussions and decisions. Perhaps they can no longer do yardwork, but they may still be able to help with cooking, setting the table, washing the dishes, caring for children, handling family finances, making phone calls or shopping by phone. Feeling useful can bolster a patient’s self-esteem and mood.
“For each action the pain person says he or she can no longer do, point out something he or she can do,” the pain association’s manual suggests.
Don’t become a go-for. Chronic pain patients should be encouraged to do whatever they can do for themselves. It is important for you to know when to step in and when to step back. Recognize the patient’s abilities and limitations — consider having an evaluation made by an occupational therapist — and let the patient participate as much as possible in daily activities and self-care.
Communicate. “Open, two-way communication is crucial to dealing effectively with chronic pain,” said Dr. Turk, of the University of Washington. “Family members need to know how they can be helpful and what might be hurtful.”
Failure to communicate honestly and openly can become a cancer on a relationship, be it with a spouse, parent or child. If chronic pain has disrupted family plans, discuss a reordering of priorities. It may be possible to do more than you think.
You have a right to say that you are tired and need to rest, that you need a break from the routine lest you burn out, and that you need to maintain friendships and pursue enjoyable activities outside the home from time to time.
Likewise, the patient has a right and responsibility to express fear, disappointment, guilt and bad feelings about the behavior of some people, as well as gratitude for the help you and others provide.
Ask periodically what the patient might like to discuss with you or do with you. And try not to rise to the bait when the patient is critical or lashes out at you despite all you do. Most often, you are not really the target. But there may be no one else with whom the patient feels safe to express distress.
Take care of yourself. Enlist all the help you can get from family members and friends. Older children can clean the house and prepare meals. Friends and relatives who offer to help can be given tasks that fit their abilities, even if it is just accompanying the patient to a medical appointment. If they haven’t offered, ask.
When necessary, hire others, including neighborhood teenagers, to help out. If you are reluctant to leave the patient home alone, ask a friend or neighbor to stay for a few hours or to look in on the patient every so often so that you can get out for a while.
Don’t neglect your own physical well-being. Eat regular meals, get enough sleep and get regular physical exercise. And be sure to keep up with medical checkups and screening exams. If you get sick, you won’t be much use to the patient in pain.