Ask Dr. Paul: Spring 2008 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 psychology expert.
Dear Dr. Paul: Do you have any suggestions on how to talk to family about my illness? I am the only one in our immediate or extended family who has any form of autoimmune disease and I am often overrun with questions or comments that are quite difficult to answer. For example: "No one in our family has it, so how could you have it?" or "What have you done in your life to get such a thing since no one else has it?" It’s bad enough that I feel isolated with this disease, but to have questions or comments like these, it can be just overwhelming.
Speaking about illness to family members is one of the challenges and, too frequently, one of the frustrations of having lupus. It is difficult to make others understand the nature of lupus and its fluctuating symptoms. But questions such as the ones you have to face can cause you to be defensive, hurt, frustrated, and angry -- as you say, overwhelmed.
Try to remember that, in general, family members are not hostile and are not intending to hurt you. They simply don’t understand. It might help you, and them, if you let them know that you recognize their confusion.
You have had to learn about lupus over time and through a series of symptoms and flare-ups. Try to be patient with those who care for you but who haven’t learned, as you have, what lupus is and how it manifests itself.
Dear Dr. Paul: What do you say to your spouse who thinks they always know what’s best for you? I’ve been so exhausted lately and all I want to do is sleep and rest. My doctor says to listen to my body. But my other half is always telling me to get up and do something, even if it’s just moving to the couch to watch TV with her. I don’t want to cause a fight so I get up, and end up feeling worse and resenting her. She goes on Web sites to read more about my disease, and she says it always says if you’re more active you’ll feel better, but that’s not always true. Most of the time I end up so exhausted that I sleep the whole day away when she goes back to work. I know she just wants everything to be like it used to be and for me to not be sick, but I am. I just don’t know what to say to her anymore.
You want understanding from your wife, not advice and suggestions. One of the difficulties of having lupus is the need to ward off those who want to tell you "for your own good" how you should cope with your illness. When the person with the advice is your spouse, with whom you spend so much time, the difficulties can be far too frequent.
I suggest that, instead of conforming to her suggestions or rebelling against them, you initiate a sensible, formal conversation about her need to help. Start by giving her the kind of understanding that you seek. Let her know that you hear her fears that you are not doing what is best for coping with your illness. Show empathy for her desire that you be as healthy and active as you once were. Convey to her your awareness that she wants to help. Let her know that you know it is difficult for her to see you ill.
When your understanding has been received in a way that you feel connected with her, go on to express your wish that she listen to you rather than push at you, that she realize you are not giving up, but there are times when the best thing for you is rest.
Your illness is something you are both being forced to face. You need to be united in the endeavor. Listening and sharing openly is the key to that union. Advice, conformity, or rebellion leads to separation -- you can’t let lupus have that horrible effect.
Dear Dr. Paul: My daughter might have lupus, and I have a lot of questions about how lupus is diagnosed. How do I get a physician to really take a look at her?
Your question suggests at least three issues:
- Finding a lupus diagnosis. You need all the information available about lupus. The best source is the Lupus Foundation of America. The LFA is up to date on all aspects of the illness, including diagnosis, symptoms, and treatment. Learn all that you can on the LFA Website, lupus.org, before visiting a doctor. You may also want to contact the LFA Health Educator to ask general or specific questions. Call toll-free 800-558-0121 and leave a message, or send an email to info@lupus.org.
- Having a frank and open discussion with the most qualified physician available. Again, the LFA and its chapters can assist you in finding such a doctor. Prepare for the appointment with a clear record of the symptoms you are observing. Be ready to share your concerns about your daughter and even your doubts about being taken seriously by the doctor.
- Having a significant, satisfying conversation with your daughter. Is she open to your help? Does she share your concerns about her potential lupus? Is she free to share with you regarding her symptoms, feelings, and needs? Is she confident that you listen to her? You two need to be a team as you approach the health care system and, possibly, lupus.
"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.
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.
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