Helping The Family Cope With Lupus

Lupus not only affects the individual who has the illness but also the patients' family. Changes in chores, responibilities, and interactions can all be consequences of lupus in a family member. Friction can develope, and a strain among family members may be very unpleasant besides being harmful. So what can you do? Let's discuss a few ways of improving family relations.
The Family Powwow
The Family Powwow is a strategy that can help you restore at least some constructive communication within your family. Set aside a regular period of time (from 30-60 minutes once each week is a good way to start) when all members of the immediate family can sit down in a comfortable place. Minimize any disturbances. Give each person a predetermined amount of time (5 minutes is enough to start) to gripe, air grievances, cry, or anything else, as long as it is intended to be constructive. No one should interrupt. Reactions should occur after each person has had his or her five minutes. You might want to provide each participant with a pencil and paper to jot down some notes. Sound formal? Maybe, but it's a very good way to open up those damaged lines of communication. Subsequent family powwows should focus on improving communication, as well as targeting specific areas for change.
Negotiating
Part of any good family communication improvement program should be the process of "negotiating." What do we mean by negotiating? "Compromise" might be another word. Discuss an issue in such a way that everyone involved in the conversation feels that he or she has been heard. Any conflict, in order to be satisfactorily resolved, requires "give and take" on all sides -- hence, negotiating. Let's clarify this with an example. Pauline, a 43-year-old mother of three, was diagnosed with a chronic illness. Her doctor told her she'd have to cut back on her housework to attempt to reduce fatigue. The resultant stress placed on the family (both physically and emotionally) could be destructive. But if a family powwow were arranged, with meaningful negotiating of responsiblities, as well as discussing changes that would be necessary each participant could walk away feeling that progress has been made.
Looking Through the "Other's" Eyes
In order to communicate effectively, it is extremely helpful to view the problem through the eyes of the person you're talking to. If you're totally wrapped up in your point of view, you'll be unable to understand anyone else's feelings or comments. But if you try and "put yourself inside that person's head," see the situation through that person's eyes, communication will improve. Why? If you understand what the other person sees and feels, you'll be in a better position t0o discuss the situation from your point of view.
Dealing With Hostility
Hostility between family members may be a way of life. But if any efforts to improve communication are going to be successful, you'll want to try to learn how to deal with hostility.

What may bring about hostility? It might result from the anger you feel because a chronic condition has forced changes in lifestyles. Hostility may be directed towards family members who seem unable to handle changes necessitated by the condition. Hostility may be a mask for defensiveness. Under some situations, a person is hostile simply because he or she is unable to respond, doesn't know how to respond, and doesn't want anyone to see that.
Let's assume that you recognize hostility as being a problem. If it's your own hostility, you can begin dealing with it by using relaxation procedures and by pinpointing the sources of your anger. Then you can attempt to rectify the problem. If, on the other hand, the hostility is coming from other members of the family, what can you do to improve this situation? Try to talk it out. Explain that hostility is counterproductive. At the same time, acknowledge that it shows some very strong emotional feelings which need to be discussed. Sugest that you sit down and have a family powwow to try to figure out ways for things to be worked out.
But what if you can't even approach the other person? What if the other person is so hostile that you can't seem to penetrate that wall of anger? Is the relationship doomed to failure? It doesn't have to be. What can you do? Try writing a letter! It may be a simple short letter. Just say that you want to improve the situation and suggest a "truce" so you can try to talk about it rather than turning away from the problem. The person will be able to read the letter and not have to worry about reacting defensively because you will not be there watching for reaction. At the end of the letter, request some type of reply to at least let you know the letter has been read. Maybe there will even be some suggestions as to how to proceed from there.
A Final Communication
One of the most important factors in the successful adjustment to living with a chronic condition is a supportive family. It's worthwhile trying to improve communication. With it, family unity is within reach. Even if a problem can't be resolved, feelings of sharing the problem can be comforting. Without communication, the family may be nothing more than a group of individuals living under the same roof.

Dr. Phillips is on the Nat. Board of Dir., LFA and a psychologist on Long Island, NY
Founder & Director of the Center for Coping with Chronic Condition Garden City, New York