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!
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
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.
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.
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.
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.
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.
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.
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 .
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?
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
Health*
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.
My girlfriend has SLE and it was treated on 2016 now she get into a very bad mood swing and there is a lot of problem between us regarding silly stupid things. I do care for her. Took her for regular checkup. Even though she is not willing to marry me. She got irritated for no reason and prepared for a marriage with a random guy. Thats all she blocked me no chance to meet. I dont have a single chance yo explain about the SLE to my gf and her family members. Its all gone dye to this disease. One thing, disease can be cured or treated but the effects after the medication is impossible to cure. Let them decide and have a happy life
My wife have a lupus ….i did marriege before one year …can we take divorce…..behalf of this dieses.
My wife cheated me before marriage she is suffering from SLE,after 1 year I come know that,after marriage she used complaint her problems.
My wife left me shortly after finding out she had lupus. I could tell her mental health changed a lot a few months before being diagnosed. I believe her lupus and her intake of marijuana messed her brain chemistry so much that she did things I would never think she would do otherwise. She cheated on me everyday for 5 weeks while living with me then I decided to move out because she got physical. I didn’t know lupus affected people’s mental health to this extent, where they even seem crazy. I miss her but I’m very thankful to God that I wont have to deal with her disease for the rest of my life.
Vicman—-. Pot did nothing but help her cope with pain both physical and mental. I have been living with lupus SLE for over 30 years. My wife had went through studies at Johns Hopkins Hospital. She had to have chemo to kill her immunity. All the prednisone she has had to take gave her osteoporosis in which she would get rib fractures for just coughing or sneezing. I had to give her injections in her belly for over a year of this medicine called fortayo (spelling?). This did allow her bones to gain strength again. She of course still have to take prednisone just in smaller doses. I could go on and on but just to say we had 2 daughters. One came out fine the other (our last) came out and had only 7 adult teeth and she couldn’t go to the last 3 yrs of high school because she had juvenile authritis. All of our children are married now but my youngest has had a lot of health issues and my wife and I pray that she doesn’t get diagnosed with lupus.
My girlfriend has Lupus and it kills me cause she doesn’t know how badly she treats me. I hate the fact someone can be so mean and they don’t have energy to do what their suppose to do. Low sex drive is a deal breaker. How can I fix this or should I just walk away?
My wife has Lupus. We have been together for almost 4 years and married for almost a year. Before she got pregnant she had a very high sex drive like I do… Now it is almost non-existant, I love her soo much but it just gets soo frustrating when I always want to have sex and she does not. I am also 14 years younger and we have a little boy that is almost 2. I hate seeing her in pain and not being able to make her feel better. I can’t help to think sometimes her not wanting to have sex has something to do with me, but she says it really isn’t….. I do all i can to help around the house, she stays home with our son (other than a little cleaning job here and there) I just wish her desire to have sex more often comes back :(
Yes lupus is hell I deal with it everyday and it’s sad that the spouse don’t take the time to read. We are suffering in our own bodies so don’t be so selfish this is real no one would wAnt to fake this trust me.
I have what doctors so far think is neuropsychiatric lupus. I am anemic. I have narcolepsy. I have arthritis. I have carpal tunnel. I have spinal stenosis. I have autoimmune inner ear disease. I have degenerative disk disease and have one fourth of my spine fused. I have gastroparesis. I have peripheral neuropathy. I have Reynaud’s. I have interstitial cystitis. I have irritable bowel syndrome. I have fibromyalgia. I vomit multiple times daily. I rarely remember what I did hours after I have done it. If I do not get enough sleep or my fever gets too high, I go into an almost psychosis like state. Most recently, upon diagnosis, I learned I have livedo reticularis or purple lacy skin, and here I always thought I was just very pale. Those are some of the things the doctor has attributed to lupus, things I have been dealing with for over 15 years. I was diagnosed in December, four days before Christmas, and the last four months I have also had depression. People talk about their spouses as if this is the life we chose for ourselves, to always be sick, and to constantly be adding diagnosis to the list. I do not want to be sick. I want to play with my kids, who are 17, 11, 7, and 5. I want to take them places. I want to give them a childhood that does not consist of mommy always being sick. I am day 9 with a fever, in this brief moment of clarity, googling how to save my own relationship. My fiance, he does not quite understand the extent of my illness, and it has been devastating for us both. Earlier today I was barely able to speak, the words would not come out of my mouth. I knew the words I wanted to say, but could not push them from my brain to my mouth. Sometimes the words are slurred and at 16 years sober, I sound like I’ve had a whole handle of liquor. There are other times I cannot think of the words, so I try my best to explain them. Yesterday it was the thing you put the money in. My kids of course look at me like I am losing it, because well, I am, and I finally go and get the object to show them. Piggy bank. The thing you put the money in. At 36 years old, I struggle to teach my 5 year old how to read, because there are days my brain will not cooperate. My oldest moved out this year for school, and without my 11 year old, I would be lost. As a parent, to know how much of a burden it is for him breaks my heart. It breaks my heart for all of them, my fiance included. This is not the life they wanted, this is not the life I wanted, but this is the life I was given and I need to make the best of it while I can. I do not know what my future holds, maybe a marriage, or maybe I will soon be single. To feel the pressure of problems in your relationship while being sick, it is something I would not wish on anyone. I do as much as I can every single day, I do the best I can every single day, and somehow it never seems enough. My fiance says he misses the girl he fell in love with, and so do I, but I do not know when or if she will ever fully come back. Mourning, being diagnosed with lupus is like mourning a death, except the death is your own while you are still alive. Being able to feel the cognitive changes while they are happening, it feels like someone is taking control of your brain and there is nothing you can do to stop it. I feel like I am losing my mind half the time and it is truly a horrible feeling. The headaches, the ringing in my ears, the vomiting, and the pressure in my head, some days it gets so bad I cannot take it and sadly I have begged God to please just let me go. To be in that amount of pain, to ask God to just end your pain and take your life, it is something I hope none of you ever experience. The hospital does nothing, so you stop going. I have negative ANA lupus, rare I’m told, so doctors missed it for over a decade. Lupus cerebritis is my diagnosis from the oncologist, with a clear MRI. So, I wait and wait and wait for a rheumatologist to see me. I call office after office, begging for a new patient appointment. Eight months. Six months. There is always a wait list, so I will travel 5 hours just to see a doctor this week after waiting almost two months. People ask all the time, do you want to get better….rarely understanding that it feels like no one else cares if you do, even the doctors. It is torture, it is fighting against my own body every single day and praying that I somehow defeat this. I am 36 years old, I am not ready for life to be over, and I am tired of being sick. Sometimes people think since you have been sick for so long that it just gets easier when the truth is you just get more tired. My heart aches for the people who were left, the marriages failed, families torn apart, and children affected by this disease. This is not the life I wanted, but this is the life I have. I told my fiance to leave me when I was diagnosed, he swore he was strong enough to withstand the changes and unfortunately has not been. Instead of his fears of my illness coming out in concern, they come out in anger. I know I have changed, my love has not. To watch the person you love slowly give up on you, while you try not to give up on yourself, that is the hardest thing I have ever been through. I do not blame people for leaving, it is an ugly thing to watch, and it is life changing for everyone. I get anywhere from 15 to 90 minutes where I feel myself most days. The rest of the time, my head is so fuzzy you would think it wasn’t attached to my body. I am sad. I am angry. I am lost. I am heartbroken. Most of all, I am scared. The fear of doctors not figuring things out before it is too late. The fear my fiance will leave. The fear of dying alone. The fear that I’ve ruined my children’s lives being sick. The list is endless. As lupus attacks my nervous system, my emotions are all over the place and in moments of clarity sometimes all I can do is cry…because I actually realize how much of me lupus has taken away. If you love someone with lupus, please be patient, and most of all please be kind. It is hard to describe how I feel at times or tell anyone what I need. I do not get drunk and mean like that wife in comments above and I’m sorry she is that way. It is not fair at all. My intimate life has not changed much but I do understand that part for the men above. Lupus does not make you feel beautiful and there are days I wonder why anyone would ever be attracted to the train wreck that I am right now. Not being able to speak or walk, feeling like you are shaking internally, vomiting daily…it is hard to feel pretty y’all…it is hard to feel anything but sad at times. I know I’m rambling. I just hope it helps someone, anyone. God please let it help some man understand his wife, give him the strength to fight this with her, because feeling like you are alone while your body is destroying you is a special kind of torture. If you feel you cannot withstand the lupus, then be honest. I wish you all well, in your lives, in your relationships, and those with lupus…I wish you strength in your fight.
You have no idea how much you helped me understand. There are no words to express how grateful I am that you shared all of that. I believe you may have helped save 2 soulmates not give up on each other. Thank you SO MUCH!!! I hope you are doing as good as possible, I’m sorry you have to deal with this.
Hi ya’ll,
Just had a dear friend diagnosed with Lupus. I wouldn’t call her my girlfriend, but we are connected emotionally on that level. I’ve known her for a couple of years now and have seen all the medical problems that it can cause. She has a tendency to push people away, and not allow them to get close (it’s taken us two years to get to even the point that we aren’t now). My question is how can I be there for her in a way that she needs, without smothering her, but making her not feel neglected? This is a woman that I would love to marry someday despite the challenges that come with her health, and would feel like the luckiest man alive to do so.
My gf has SLE . Can i marry with her ?
SLE can run to husband ?