From the Archives: Summer 2008 issue of Lupus Now

Be sure you identify your goal in speaking to human resources. If you are seeking sympathy, talk instead to a friend, family member, or counselor. If you want to inform human resources of your lupus in the event that you might need to take time off to see a doctor or to get treatment, be clear about the amount of time. If you need accommodation in your work schedule or your job description -- for example, fewer days or hours, a reprieve from travel, or a place to rest -- then be clear regarding the specific accommodations that you require. Communicate your commitment to do your job effectively and reassure them of your ability to do so. State your need for full-time employment, as well as your salary needs. Don’t be aggressive and don’t be apologetic. Be honest and, above all, be clear.

Dear Dr. Paul:
I am a male who was diagnosed with lupus a year and a half ago and I am on two different types of drugs, but I’m not any better. I have been to many specialists and now my primary care doctor is taking care of me. I don’t feel he knows how to handle the lupus. He is never concerned when I am sick or losing weight or giving off protein in my urine. I would like to find a doctor or some information about what to do.

One of the first tasks for the individual who receives a diagnosis of lupus is to find a good doctor. This doctor has to be informed about lupus, needs to listen well, and needs to be available. If you have the sense that your present physician doesn’t understand either lupus or you, search until you find someone who does. Physicians who specialize in diseases of joints and muscle -- like lupus -- are listed by location at http://www.rheumatology.org/directory/geo.asp. Don’t hesitate to ask questions (“What does the protein in my urine mean?”). Don’t hesitate to speak up (“I don’t understand why you aren’t concerned about the protein in the urine.”). You might be tempted to play the stoic, silent type to try to offset any stigma of having an illness that affects women more often than men. Don’t succumb to that temptation. You need information and answers from your doctor. You need attention and understanding. Make sure you get those needs met.

Dear Dr. Paul:
My doctors seemed to be ignoring the leg pain I’m experiencing due to long days on my feet at work. I cannot take anti-inflammatory medications, so they’ve prescribed gabapentin but it’s not helping the pain. Do you have any suggestions about what I can do for pain relief?

Pain can frustrate as well as hurt. It can be very difficult to describe and sometimes very difficult to relieve. Certainly try to find a doctor who will work with you to explore possible treatments. A pain clinic might be helpful, as might physical therapy. You mention that your pain stems from your work. Have you explored with your boss and with human resources possible accommodations that would allow you to do your work with less stress on your legs? Limiting the cause of the pain would be the first step in controlling it. You might need to assert your needs at work and might want to express yourself more boldly to your doctors. You have to be your own best advocate.

"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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