From the Archives: Summer 2006 Issue of Lupus Now magazine
Ask Dr. Paul
Redefining the Rules of the Game
Men, especially when newly diagnosed, often feel alone, confused, and frustrated when trying to cope with a disease neither they nor the people in their lives understand. The overwhelming response to our Summer 2005 "After the Diagnosis" cover story featuring Tony Jackson underscored the need for that support, so we are excited to debut this new column especially for our male readers with lupus. Our "Ask Dr. Paul" will offer advice for your most pressing questions. So guys, Ask Dr. Paul whatever's on your mind, at lupusnow@lupus.org. We'll do our best to be here for you.
Dear Dr. Paul: I wonder how other men are doing with lupus physically? What medications are men using? Are there any new treatments or any diet and holistic recommendations? I am a 28-year-old white male in very good shape (I played college football) with no limitations in my life. I have always been active and in the sun, and now the sun brings out the worst in my lupus. Any suggestions? – M. Comella
You are going to need patience and courage to confront the limitations that lupus enforces on your life. At 28 years of age and in great shape, it has to be agonizing to face the fact that you cannot do everything you once could. Your challenge is to let go of what you cannot do and to focus on what you can. Not an easy challenge!
According to our medical expert Robert G. Lahita, M.D., Ph.D., chairman of Medicine and vice president of the Jersey City Medical Center in Jersey City, NJ, men with lupus do well physically. Unless there is some underlying loss of androgen, which does occur in a minority of men with the disease, there is no reason to believe that physical stamina and strength will decrease. Also, diet recommendations and medications for men with lupus do not vary from that given to women with the disease. We learn in life to do those things that give us satisfaction and pleasure. You have learned that outdoor sports provide that sense of well-being. Now you have to find ways to continue some of these activities: when outside cover yourself with sunblock, wear lightweight UV protective clothing, play outdoors in the evening, swim in an indoor pool or play tennis indoors, or take a new role in sports, such as scorekeeping. You also need to explore and discover other activities that are satisfying and that don't threaten your lupus. You will feel more peace and less frustration the more that you focus on what you can do and the less you think about what you cannot do.
Dear Dr. Paul: I am a guy who has been diagnosed with lupus for more than six years now. Is there a better chance that my children and grandchildren will get lupus because I am a male? Is there a difference if you are male or female with lupus as to who we pass the disease to? – V. Klemmer
I checked with our medical expert, Dr. Lahita, and he says: "There is no greater chance that you as a male will pass your lupus to any of your offspring. If this were the case, there would be a direct genetic link to the disease, and as far as we know, this does not exist. Most of the cases studied by my group involve lupus in families where a mother has the disease, but this might just reflect the fact that more women than men have the disease. For the most part, lupus occurs sporadically or in conjunction with other members of the family who have other rheumatic diseases like rheumatoid arthritis or multiple sclerosis. I would not worry about passing the disease to anyone." I hope what Dr. Lahita says eases your anxiety about passing lupus on to your children. Guilt and worry about the impact of lupus on those you love are natural consequences of having the illness. You might feel guilt that you can't always be the robust partner and dad that you would like to be. You might worry about the effect that your condition has on your spouse and children when you can't do what they and you wish. But as Dana Reeve said to Christopher Reeve after his paralyzing accident, "You are still you." You can bring to those you love your warmth, humor, goodness, and love. Fight off the guilt and worry and give your family even more of you than you would have if lupus had not come into your life.
Dear Dr. Paul: My biggest question is dealing with my sons. Both of my boys are the age where they like to get out and play-soccer, football, baseball, wrestle, you name it -and they love to go out and play with their Dad. Some days it is all I can do to get out of bed, let alone stand and throw a ball back and forth. Other days I feel great and go out and overdo it to make up for the lost days, and that puts me over the edge again. One of the tricky things is that I am very photosensitive, and being in the sun for any period of time can cause me to go into a flare. I want to be an active part of my boys' lives-camping, fishing, sports, and homework-but I find it increasingly difficult to do these things. How can I better interact with them other than playing video games? – T. Mitchell
Lupus is hardest to endure when it deprives us of doing things with those we love. We hate to disappoint them even more when we feel the loss ourselves of a fun activity. And we often overdo the activity out of guilt as you have done, often at great expense to our health. Your boys need to be trusted with the truth: you love to play with them and you do so gladly at those times when you are able. Sometimes you will be able only to sit in the shade to watch or coach them. They have to know that you love them and want to be with them-that assuring truth means more to them than your actual physical presence. It is important that you be creative, focusing on what you can do with them rather than tormenting yourself about what you can't do. You might share with them sedentary activities that you enjoy, hobbies such as putting models together or constructing model train sets. You might select books together and read to them. You might teach them to play checkers or chess or card games. The illness can actually lead you and your boys to new activities that you might never have discovered if you had not been physically limited. None of this is to deny how painful it is not to be able always to join them in activities that they and you love. Your illness is not just yours. It is also your family's, but they can learn, like you, to bear it. The illness can make you and your boys closer. It is your heart-wrenching challenge to let them endure the illness with you.
"Ask Dr. Paul" is Paul J. Donoghue, Ph.D., a psychologist in private practice in Stamford, CT. 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.