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Lupus: Marriage, Family, and Sexuality

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!

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6 Responses to “Lupus: Marriage, Family, and Sexuality”
  1. Susan m Kennedy says:

    Need to talk to a counsler because husband is very distant and standofish. Im very sad I have lupus and was very happy in sex life with husband now everything has changed. Theres no touching from joe and it hurts and cuts deep within my insides that my stomache hurts so bad joe had no idea. The lups and RA and fibromyalgia and back discs are there but I love so many family members and need joe my husband to come back from being that this way. Please answer Desperet x-mas day 2:55 in morning. Thank-you for your time Susan Kennedy

  2. John says:

    My wife was recently diagnosed with SLE. But our sex life died over a year and a half ago, probably due to undiagnosed SLE. She drinks herself silly regularly. After a couple of drinks she’s rude, mean, angry and much more.

    When I reach out to touch her she pulls away or starts talking about anything that curtails intimacy. In short, I’ve been getting pushed away for a very long time now.

    She’s still beautiful to me. But the nightly alcohol induced nastiness will kill our marriage, if it hasn’t already. I’m just getting pushed away
    one drink at a time.

  3. B says:

    To spouses of SLE:
    I’ve been married nearly 20 years to my wife. She was diagnosed several years ago with SLE. Understanding that SLE is a LIFE altering change can be difficult. Address your wife’s drinking first, then address individually all that SLE will change. Remember, SLE changes what and how someone does something. The spouses of SLE have to step up and do more around the house. look up SPOON THEORY. Sex life is more like cuddle, hug, kiss, connect time. You both have to work together on what works well and when it works well. Remember you will be doing more around the house so plan accordingly. after you’ve done everything you can to help, you might be the one saying, “not tonight, I’m tired.”
    Remember everything changes.
    Have an immaculate house= expect more dust.
    Go out every week= expect to miss a few times.
    Stay up late= expect some early bed times.
    Gotta run and hug my wife, gently.
    Take care and good luck.

  4. me says:

    I’m going to leave my wife over this. I need a companion that is out door active with me. I need to be satisfied sexually. I love her… But in life a person can love others as well. I suggest a person with SLE stick with a person with SLE and voluntarily leave on their own. Good luck to ya’ll.

  5. Vinny says:

    As my wife is going through testing and more and more symptoms come out, I find myself wanting to help her more, not less. I feel like that is part of the promise I made her in our vows that “in sickness and health” I would remain faithful and supportive. I see my wife go through changes and I pray for her often but I also try to listen more intently(read as-Turn the tv off) and really try to hear where she needs me to pick up my game to help her. I’m sorry the poster feels they should leave their spouse so their life can be “better”. No offense but I hope and pray my heart never gets that calloused. I hope there can be some change in people’s hearts rather than break ups.

  6. Junior says:

    I have my girlfriend diagnosed, I didn’t know , what this was but now that I have read about what symptoms there is and about mod changes I found myself thinking she was crazy or that I was but now I understand more and more. And I know there is difficult times but if u really care and love ur wife girlfriend friend I recommend read about lupus and understand it be supportive ask questions, also what if it was u. Diagnosed u would like support and feel helped.We take it one day at a time.

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