Dating someone with lupus ?

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New Member

Date Joined Feb 2012
Total Posts : 2
   Posted 2/18/2012 10:23 AM (GMT -6)   
Hi.. I am trying to sort things out. and wanted to get some feedback here.. seems to be a good forum/resource.

I am 32 years old and met an absolutely beautiful woman with lupus. She is 30 years old and is such a nice, genuine person.... We just started dating.. obviously there has to be a mutual attraction, which there is. She has very active disease, not a mild case at all. I like her a lot and am in awe of how much she can accomplish... despite aggressive disease, she exercises intensely and works full time..

But I am also terrified. She can (and likely will) get really sick. She may be on steroids which could change her appearance (she has resisted them thus far because of that). I like her for much more than that.. but this is a challenging way to start a new relationship. Obviously attraction and intimacy are important in any relationship... scary to enter into one knowing this could be at risk. Of course there may be other issues, such as the ability to safely have children, etc

I care for her and could see myself in a long term relationship with her.. I also don't want to hurt her.. I think this is the last thing she needs. I feel like a bad person for even thinking of these things. SOmetimes I think she likes me because she sees me as her "savior" in a sense.. which feels like a burden.. But I feel she and i have a real and true connection and our personalities just click well together.

Does anybody know any good books or resources? Suggestions or similar experiences?

I know there are many posts from couples where a spouse was sick after the marriage started. If you love or care for someone, this shouldn't be an issue.. but it nonetheless is a tremendous stressor that scares me.

Post Edited (southcarolinaman) : 2/18/2012 8:32:11 AM (GMT-7)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 2/18/2012 10:51 AM (GMT -6)   
Go to and read the website. It will let you know what could happen with her and what she maybe suffering.

Lupus is a lifetime illness. There will be good days there will be bad days. If you feel you love her enough to stand by her through this the wedding vows say "in sickness and in health 'til death do us part" then you are a very strong man and your love is true.
I know that men want to "fix things" in their life, but Lupus can't be fixed and it can cause frustrations. The best thing is to be there loving and supportive. She need a partner in this illness.
My sister married a man who was crippled with a stroke. His left side is paralyzed. They have a good marriage because they love each other so much.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 2/18/2012 11:02 AM (GMT -6)   
This is a highly personal decision.  Some things to consider.
Lupus often is treatable and can be brought under control with meds but some patients have difficulty getting lupus under control.  Many lead a normal life but some have restrictions due to lupus.  We call this a "new normal."
No one can predict how an individual case will develop.  Mine was very severe but I have been in remission for 6 years.
Committing to another person is a big decision and life is never what you think it will be.  Sometimes it is better and sometimes worse, but never what you thought.  My wife and I have been together for almost 40 years and she took care of me through lupus and another disease, polymyositis, that totally crippled me.   Not fun and not what either of us bargained for.  I did eventually recover well but then she had cancer and some additional problems after that.  Again, not what you think about when young.
Through it all, our relationship has not only endured but strengthened.  No matter what happens it has been a privilege to be married to my wife and I think she feels the same way. 
You and your friend should take it easy and see how your relationship develops and if there is a willingness to deal with a known uncertainty.  Life is full of uncertainties but having lupus at least makes it a known situation.  I know several younger couples who are coping with lupus well but they struggle with the decision to have a family or not and risk flares. 
As for taking prednisone and gaining weight.  Many do but if you understand how it changes your metabolism and change what and how much you eat the weight gains do not have to be big.  I took it for 6 years and did not gain any weight at all.  And I had an additional problem with polymyositis and the loss of significant muscle tissue and was quadriplegic for several months.  Getting the disease under control should be the first priority and deal with any side effects.  Not everyone has bad side effects which primarily accompany high doses and long useage.
Hope you can find a way to cope with your friend's illness because it sounds like you really care.  In the end, you are the only one who can make the decision about what you want in a relationship and how much you are willing to give.

New Member

Date Joined Feb 2012
Total Posts : 2
   Posted 2/18/2012 11:34 AM (GMT -6)   
"But I feel she and i have a real and true connection and our personalities just click well together."

You said it all right here. This is hard to find even in healthy partners! Give it some time and see what grows.
My sister had severe lupus in a time where there was very little information, early 1970's. She had 3 children with no problem. Lupus took it's tole and I only wish she had found a person that made the comment you made above. She was married 4 times to the wrong men. She had a spirit that I only wish I had! Sounds like you new found friend does also. Lupus did not take my sisters life complications from a surgery at a bad hospital (not mainstream remote hospital) took her life. As far as looks they fade with time anyway. What you see is far below the surface if you really have a connection.

Your concerns are not unwarranted! My son, who has Crohn's/PSC, has a relatively new relationship but they appear to be very much connected. His girlfriend is wonderful but has voiced the same concerns to him but they also are HIS concerns! Communicate with your new found friend you may find a comfort zone. Remember she has come this far and trust me it is truly a battle. You may have found the perfect woman with a flaw. Who of us doesn't have flaws? Good Luck!

New Member

Date Joined Feb 2012
Total Posts : 7
   Posted 2/27/2012 9:46 PM (GMT -6)   
I think a big fear of people with chronic illness is that people won't put up with them for being sick all the time. It was a big fear for me, especially since I got diagnosed in high school so a lot of guys I knew just weren't mature enough to deal with my health issues.

Bsime is right, by the way. Although there's no "cure" for lupus, it's very treatable and manageable. Flares are tough, but getting through them together really does bring people together, whether it's a friend, family member, or lover. I was and still am super fortunate to have found someone when I was 19 that I hit it off with. We were only teenagers, but things clicked between us, just like you two. Years later, we're still going strong.

The truth is, if you guys are right for each other then you'll find a way to make it work. It gets scary sometimes, but this is one of those risks that worth taking!
Dx: SLE, Hashimoto's, RA, chronic migraines, celiac disease, fibromyalgia, chronic pain

Tx: Tramadol, Inderal ER, Neurontin, Mobic, Etodolac, Levothyroxin, Flexeril, Relpax, chondrontin/glucosamine/MSM

If somebody thinks they're a hedgehog, presumably you just give 'em a mirror and a few pictures of hedgehogs and tell them to sort it out for themselves.

New Member

Date Joined Feb 2012
Total Posts : 3
   Posted 2/27/2012 11:56 PM (GMT -6)   
For you to seek advice and care so much is an indication that you are in for the long haul! She is a very lucky lady to have you in her life. I only wish my husband had done the research and was as concerned as you. He thinks Lupus will all just blow over and in the mean time I am lucky to have 2 wonderful children and my husband is the love of my life, but he doesnt understand and that puts a real strain on me.

Only you can decide, but you are doing all the right things : )

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 2/28/2012 11:17 AM (GMT -6)   
I am speaking not in terms of an intimate relationship but in terms of a very close relationship. There are times I need help with day to day things. The person who helps me out is a blessing to me. BUT I know she gets frusterated, upset, disapointed in things I can not do. Or there are days that I cant do anything but stay in bed to keep myself from getting worse and it is very hard for her to understand why. But she is also a runner, marathon runner, and hardly sits still for a few minutes outta the day.

It can work. It will take a lot of understanding on both or your parts and one important thing you need to do is talk to her about your concerns. I found when I finally opened up about my thoughts and feelings on my situation, things changed for the better. You will find it is harder than any other relationship you have had but I also might think you will find it one of the better relationships you have been in! Good luck and I am rooting for you!
Lupus Moderater

dialysis from lupus nephritis

New Member

Date Joined Feb 2012
Total Posts : 2
   Posted 3/7/2012 7:31 PM (GMT -6)   
Thanks to all for your replies....

I like her and care about her a lot. She was hospitalized 2 weeks ago for a flare.. visited with her in the hospital, cuddled in bed with her, brought her stuff, etc.. was weird for me at first.. but was also a nice/meaningful time together, as weird as that sounds..probably that doesn't sound weird to anyone here though.

It is hard because partially she isolates herself when she isn't doing well. Like everyone, she desperately wants to get better, so when she is fatigued, or in pain, or sick she "shuts down" so to speak. I don't think she gets depressed.. just more frustrated. As you all know, when things are rough, it is easy to get behind on work, life, and other things... so she constantly is trying to catch up... She has days when she can sleep 12- 14 hours... so when she is awake, she has a lot to accomplish. At times, I fear she sees me as a distraction.. because she has very serious things to deal with such as maintaining her job and health...

We met when she thought she was getting better after months of being in and out of the hospital.. and perhaps she thought she had time for a relationship. Unfortunately, that didn't last long.

I know she deals with being sick all day long and she has told me she keeps to herself because she doesnt like discussing it... and inevitably it always come up, no matter whom she is talking to. At this time, lupus defines her day.. so almost any conversation will revolve around it. I think this also, in part, leads her to pulling back slightly... (Don't get me wrong.. I don't call and ask her right away about her disease.. I am aware she is sensitive about it so leave it up to her as to how much we discuss it.. I know it would be annoying to her if that is all we talked about)

Nonetheless, I am hanging in there. I like her.. She is resilient, very independent, kind, funny, and beautiful. I am prepared for the ups and downs.. When she has been sick, I want to be there for her.. Sure it is hard for me to completely understand her pain or fatigue.. but I know it is real.. I never minimize her symptoms or complain if they get in the way of seeing her, etc.. I may induce stress for her because she has told me she feels guilty at times she can't be with me.. or I will be home on a weekend night because she isn't feeling well...

Anyhow, I'm not sure if we will work.. At first, when i posted this, I wasn't sure I can handle it. I actually am pretty confident I can. Hopefully she can as well.. I'm not sure...

(I guess the other possibility is that she just isnt that "into me".. I'm pretty certain she is.. she always thanks me for "hanging in there".. just think she wants to get to a better place before she can fully commit to us... )

Post Edited (southcarolinaman) : 3/8/2012 2:15:47 PM (GMT-7)

Regular Member

Date Joined Aug 2009
Total Posts : 30
   Posted 4/9/2012 10:40 AM (GMT -6)   
I think different then all you. You just writing this post regarding the issue shows uncertainty.  confused Just remember if you are not man enough down the road to run with the big dogs you will be hurting her 100X more, then you would have by addressing your true feels with her now.  This fourm doesn't have the answers those answers come from talking directly with her.  Sorry for being so off but if she is fighting a disease she knows what you might be thinking and if she is the one she can assure you of any doubts.  Love is blind and that is how you have to approach it for life.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 4/9/2012 9:45 PM (GMT -6)   
Of course there is uncertainty and doubt.  It is good that it is admitted and discussed up front and not years later.  Each of you have to be committed to an uncertain relationship (all are) with known problems.  It is no different that 2 people getting remarried with children from each marriage.  A lot of discussion and concern should take place before not after marriage.  That is a mature way to handle things.
If you wrestle with all the uncertainty and still decide to commit to a relationship then good for you.  If you cannot make a strong commitment and decide to bow out that is better than being bitter and ruining 2 lives or more if you have children.  Success in marriage is difficult even if you are young and healthy without the complications of a serious disease like lupus.

New Member

Date Joined Aug 2014
Total Posts : 1
   Posted 8/18/2014 10:58 AM (GMT -6)   
Hi- I came upon this thread when researching. I have been dating somebody with lupus for a little over a year. Yes, there are good days and bad days, but it can be managed. I have had my share of doubts.. Southcarolinaman- were there any updates to your story?
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