Q: I was diagnosed with lupus three years ago and, since then, have not felt like doing much – including keeping up with my full-time job, tending to my 5-year-old son, cleaning house or having sex with my husband. My husband criticizes me for being lazy and losing interest in him. Is it typical to feel so miserable with this disease? Is there anything I can do to feel better or to, at least, let my husband know I'm not just lazy?
A: Diagnosing lupus doesn't mean identifying all side effects (and some aren't easy to diagnose). Lupus-related conditions vary by individuals, but believe it or not, your situation isn't unusual. I have observed a lot of people with lupus who occasionally experience the pattern of fatigue, depressed mood, stress, family conflict and loss of sexual interest. Virtually all people with the disease – even those with milder forms – experience fatigue or loss of energy.
Fortunately, there are several steps you can take to improve your life.
Talk to your doctor. Tell your doctor about your entire situation, including your fatigue and sexual disinterest. Some of it may be due to treatment side effects and may be medically correctable.
Follow your treatment plan. Often, the best way to minimize your fatigue is to get your disease under better control. That means taking medications as your doctor prescribes, doing prescribed exercises and practicing energy-conserving techniques.
Ask for help. Allow yourself to ask for help with responsibilities. For example, at home, get a babysitter to occasionally help with your son, hire a housekeeper or someone else to cook. At work, explain your fatigue to your boss and request help with some of your duties.
Seek counseling. Don't hesitate to get help from a psychiatrist, psychologist or other counseling professional who is trained to help people cope with depression or marital disharmony.
Involve your husband. Ask for help clearly, and then precisely explain what you need done. Ask your husband to get your medicines for you. If possible, have him accompany you to doctors' appointments, attend a lupus self-help course with you or read lupus materials. By treating lupus as a common enemy faced by your marital "team," you can achieve greater intimacy with your husband.
Plan for intimate activities. Take pain-relief medication immediately before those activities. Use stretching and/or a warm bath to relax muscles. Learn different sexual/touching techniques that are less fatiguing.
Take time for yourself. Finally, take time for rest and for enjoyable activities as well. Avoid the pitfalls of false martyrdom, self-pity, escapism, guilt, anger or overeating.
Accept what you can't change. You must accept that you will generally have less energy than you had before lupus. Life can be most rewarding when we concentrate on a few of the gifts that life provides us rather than by grasping for more.
Richard Maisiak, PhD, MSPH, Psychologist and Epidemiologist
Understand the disease, causes and treatments.