Ask Dr. Paul: Summer 2007 Lupus Now magazine
Men, especially those newly diagnosed, often feel alone and frustrated when trying to cope with a disease such as lupus. In each issue, we invite male readers to send questions to our medical expert.
Dear Dr. Paul:
My wife is showing signs of cognitive dysfunction and mood changes related to her lupus. It is very upsetting to me and I don’t know what to do.
It is agonizing to see someone you love suffer and manifest new symptoms. These changes in your spouse can cause intense feelings in you: fear, helplessness, anxiety, impatience, anger, and hurt. Unless you identify these feelings and learn to control them, they can lead to thoughts and behaviors that make life for you and your wife extremely painful. Signs of your wife's cognitive dysfunction, for example, can prompt you to have catastrophic "what if ..." thoughts, such as "What if she forgets more and more?" or "What if she can't take care of herself?" Her mood changes can trigger anger and impatience in you that can lead to your withdrawal from her or to outbursts of frustration and blame. You have to learn to live in the present, not an imagined nightmare future. You have to learn to know and control your thoughts and behavior. I encourage you to seek help achieving rational thinking and emotional awareness. The book I wrote with Dr. Mary E. Siegel, Sick and Tired of Feeling Sick and Tired, has helped many people with these issues. None of this learning is easy. Lupus is not easy for your wife or for you, but you can learn to grow in healthy thinking and productive behavior.
Dear Dr. Paul:
It really bugs me when I tell people that I have lupus and they say, "That's a woman's disease." What's the best way for me to respond?
People who are not ill frequently say all manner of foolish things when confronted with someone who has lupus. They do so usually not out of hostility, but vulnerability. They feel awkward. They don't know what to say. They are afraid of saying the wrong thing and often do just that. They don't want to offend, yet often do. They actually need your help and understanding. You need to lead the way in a conversation even when you yourself might feel vulnerable. Trust that people trying to talk to you about your illness mean well. Then, through your ease in talking about lupus, help them to relax and understand. Describe the possible symptoms of lupus and your symptoms in particular. Explain its treatments as well as the fact that it affects both men and women (children and teens, too). Be ready to respond to questions and be careful not to react impatiently to sometimes inappropriate advice and comments. You know about lupus; others don't. You want to be understood, and you deserve to be, but lead with your understanding. Let them know what you have learned about lupus: its effects on you and the measures you take to live with it. To live gracefully with lupus, you have to learn to communicate effectively and nondefensively -- another challenge of having lupus.
Dear Dr. Paul:
My friend has lupus with kidney involvement. She is on dialysis and is waiting for a transplant. What can I do to help her? I want to reassure her about her prognosis.
You want to help your friend and reassure her about her future. You might be tempted to offer her encouraging words meant to allay her fears and provide hope. Unfortunately, these words can sound false and unrealistic -- they stem from care, but perhaps not from facts. They can even have the effect of minimizing the real fears that plague her. Often the best way to reassure is to listen. Instead of offering what you really don't have -- knowledge of a positive future -- give what you do have: your loving attention. Take the time to quietly get into her shoes. Learn to listen to all the feelings she experiences. Let her know by your attention that she is safe to share with you whatever she might feel -- fear of the future, guilt at burdening those who love her, sadness that she can't provide for her family and friends as she once did, or any number of difficult emotions. You want to help, but the help has to be genuine and has to truly connect with your friend if it is to provide comfort. Although understanding is seldom the kind of "help" that is offered, it is almost always the kind of "help" that is wanted.
"Dr. Paul" is Paul J. Donoghue, Ph.D., a psychologist in private practice in Stamford, Conn. He is the co-author with Mary E. Siegel, Ph.D., of Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness and Are You Really Listening? Keys to Successful Communication. Men! Write to Ask Dr. Paul at lupusnow@lupus.org or mail to: Ask Dr. Paul, LFA, 2000 L Street N.W., Suite 710, Washington, D.C., 20036. Please include your contact information so that we can get in touch with you.