Daniel J. Wallace, M.D., is a Clinical Professor of Medicine at the David Gefen School of Medicine at UCLA based at Cedars-Sinai Medical Center in Los Angeles. In The Lupus Book: A Guide for Patients and Their Families 3rd ed. Wallace provides an accessible guide to what can be a very confusing disease, providing up-to-date information and advice to living a happier life with Lupus. In the excerpt below Wallace looks at how marriages suffer when one spouse has been diagnosed with Lupus.
Darleen and George were happily married for 5 years when Darleen was diagnosed with SLE. George had grown up with learning difficulties and had had limited educational opportunities. Darleen tried to tell him what lupus was, but he didn’t seem to pay attention. When Darleen was put on steroids and gained 20 pounds, George made fun of her appearance. One night her joints were so swollen that she couldn’t even get into the car to go to George’s friends’ house for dinner. George said that her joints looked OK to him and started yelling at her. Over the next few months, George started drinking heavily and lost interest in sex. Darleen was scared to talk to him, and one day he just didn’t come home.
Unfortunately, reports suggest that within 5 years of the diagnosis of lupus, nearly half of married women are divorced. This results from many of the emotional changes discussed above and a coping problem on the spouse’s part. (‘‘What do you mean you can’t go out with me tonight? You look fine!’’) When women complain of difficulty in keeping up with household chores, or workplace demands, or responsibilities to their children, relationships become precarious. After they have been diagnosed, I ask lupus patients to bring their boyfriends or husbands to a counseling session. They shouldn’t feel that they are ‘‘out of the loop’’ or that the doctor may be hiding things from them. If possible, spouses should be included in any decisions.
Spouses should know that steroids can alter appearance, mood, and behavior and that family responsibilities might have to be shifted for a time. Parents may ignore problems, smother the patient, or act somewhere in between and be appropriately supportive. It is up to the patient to decide what role they should be assigned, if any, as part of the recovery plan.
Surprisingly, very few of the reasons for divorce among patients with lupus have anything to do with sexuality. A detailed survey showed that only 4 percent of women with SLE had major problems with sexuality. Most of these cases dealt with a dry vagina from Sjo¨gren’s syndrome (also causing dry eyes, dry mouth, and arthritis) that is difficult to lubricate and can cause painful intercourse. Other cases involved women who understandably complained of being too tired to participate in sex. Destructive hip changes from arthritis or avascular necrosis also make lovemaking difficult, but they are easily resolved with creative sexual positions and/or corrective surgery. Divorce or separation arises from not being frank with a loved one, altered expectations, lack of knowledge about lupus and how it can affect mood and behavior, and from husbands’ reactions to learning that their wives cannot bear children—which of course does not apply to all women with lupus. Keep all communication channels and support systems open!