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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!

Recent Comments

  1. Susan m Kennedy

    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

    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

    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

    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

    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

    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.

  7. max

    My wife has lupus. It has changed our lives. I have to be around more with the kids and we do not have many friends over because of the strain puts on her.
    Our physical relationship does not exist.
    It is tough on everyone kids included.

  8. Devin cooper

    My wife has lips sle and it hurts me cuz she’s mean and sometimes I forget it’s the lupus but she says things that cut deep she does not even understand how sharp her tongue can be then i forget and talk crazy yell and get angry but rite after i feel like an idiot i pray daily cry and pray some more cuz I no it’s not her she seems to think she’s always been this way with her mouth and rudeness but she was not i won’t ever leave her but i need help understanding how to cope without letting her siteffects hurt my heart or cause me to lash out on my queen cuz I need her we have 4 kids and its so hard but u won’t leave cuz i no she loves me as I love her .

  9. SLA

    I am the wife with SLE and I watch everything pile around the house. I cannot bear to do even the simplest tasks sometimes, especially in a flare. I want my husband to be happy, have everything he wants and needs but I need him, too. I know it isn’t fair but I cannot bear to leave him because I love him so much. Shall I allow him to get what he needs elsewhere but stay married to me?

  10. D

    First off to the jerk who leave so they can be happy karma is all I have to say!!! My fiancé didn’t know what he was getting into I have had lupus for 6 years I had it before I met him. I never met someone who is more caring and loving. He even got me a Purple Heart necklace to wear saying it’s his promise that we have lupus not just me. I see my friends who have lupus and how mean guys can be to them. Me and my fiancé have strong faith and pray a lot. I am a strong woman I even workout everyday. I am going to be a stay home wife and mom. My fiancé want me to just focus on my health and being a happy wife. I love cooking and cleaning so that is my job. But I pray for all you lady’s and go hang in there and find the right guy. Don’t let verbal abuse win. Stress can kill us or give us flare ups so for you’re help to be in a healthy happy relationship.

    Much love Danielle

  11. D


  12. Chris

    Every time my wife gets sick (has/seems to be having a flare) I find it very hard to be the rock I feel she needs. Tonight I basically started sobbing. I know she’s dealing with the actual ramifications of the disease, but I feel equally affected. Please help.

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