WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

Dawn

 I'd agree with that.  My boyfriend lives in another state, so we only see each other about every other month.  I don't think he's fully grasped how totally exhausted I can get and how quickly I wear out.  We recently went to the country music festival in Nashville, TN.  After spending all day outside in the sun, walking around and then a 4 hour concert every night - it was REALLY hard to want to be "romantic" when we got back to the hotel.  It has nothing to do with him - I absolutely adore him and I miss him when he's not around, but you really can't MAKE yourself awake, alert, and aroused when you're just not feeling it.  

Of course there's the weight gain from the prednisone.  I'm lucky, in a way, my bf is a big guy, so he doesn't care.  Plus, I've only known him at this size.  But I've gained 20 lbs since my original diagnosis.

Also, he likes to go out a few nights a week and drink.  Alcohol really flares me up, so it makes it hard to want to go out with him and his friends when I visit.  I think he takes it personally or thinks that I don't like his friends, but I really just don't have the energy to keep up with them.  

I think it's a matter of really educating the person you're with.  I can only imagine it's impossible for someone to understand when they haven't been there. 

43 months ago

Gabbie

i learned not to push my self when it comes to being behind closed  doors. but when your tried  theres no point of pushing your self to make the other person happy.

43 months ago

Karen

This has been an issue for me and my partner from the begining. We use to date a long time ago, before the lupus and we were young and wild. We had no off switch. Since we have gotten back together all the rules have changed. I am tired and in pain most of the time, heck I am a a stay at home mother of two, how do you feel sexy after chasing girls and playing barbies all day. I have learned that he needs his 'alone' time with me, even if we are just laying around doing nothing. I am happy that he 'needs' this from me, makes me feel wanted. Who doesn't want to feel wanted, especially when you feel like a shit. He has gotten in the habit of telling me how great I look or how beautiful he thinks I am at the oddest moments. The hardest part of him is not taking it personally when I am just not in the mood. Or rather not able to do anything. He is learning that I get just as frustrated, if not more about the situation. I am also learning ways to help myself feel more in the mood, sometimes slipping into something sexy does the trick. Your tired and wore-out but suddenly you feel hot. Getting into the mood is half the battle, once there I let him do all the dirty work.

43 months ago

Jenn

I totally understand your feelings. I don't have a boyfriend at the moment but am dating someone and it taps into my insecurities of being able to handle the whole situation like I used to. I have lately just brushed it off to where I think I don't need it but that is due to all of the lovely things I have and meds I take that make me feel unsexy as you put it. It sucks cause I am stil dating so to most it's less understanding. I try different things to change moods and such but most don't work. If any suggestions I am open!

42 months ago

katie

I was just talking to my sister who also has Lupus, about how much weight I have put on, with all the meds and what not. I was married, but he was an idiot, and left me after three months of marriage.. he didn't have a problem with my weight or anything.. but he did have a problem with my lupus, he didn't fully understand it.. my problem now is .. finding a guy who will accept me for me totally.. Lupus, weight, sick days, blah days, lol.. I feel like I will be alone forever.. and the only men in my life will be my dad and my son..

40 months ago

Beth

I have Discoid Lupus, so my BIG issues are the skin discolorations, and the hair loss. I look in the mirror and see the "balding lepard lady" ...that's what I call myself. But how can I feel sexy or desirable when I have these drawbacks. I want to date someone who knows what Lupus is and can accept what this disease has done to my body, but see the fun, sexy smart lady who is inside the body. 

37 months ago

Summer

Boy can I relate to this topic as well. My embarrasment is sometimes with my lupus I get a rash in a rather private area, although I know what it is I am afraid to see my FWFB. I do not let him come over, although last time I got the courage to tell him about it. I known this man before Lupus and presently, which is almost five years and yet I still have some intimacy issues. After my lupus diagnosis it became painful physically to be intimate, so we found other ways and I also discyssed this problem with my gyn and since I am on vaginal hormones it is much better!

31 months ago

Margie Lee

I have intimacy issues that I am trying to work out. I spoke about my therapist about it today. I don't have any self-confidence when it comes to relationships with men.  I have always had trouble with my lupus. I feel that I am not worthy (or worth what I will put a guy through). I guess it has something to do with what happened with my relationship when I was diagnosed. My boyfriend (of almost 8 years) broke up with me because he couldn't handle it. I have not had a boyfriend since. I feel awkward and don't believe that I really should put someone else through my illness.
Also, it doesn't help that I gained 80 pounds on the prednisone (it took me almost ten years to find a medication that I was not allergic to). I just do not feel attractive in the least and really have no ambition when it comes to intimacy. I do have feelings for someone (who knows I have lupus and has been there for me over many years). I just am so guarded and reluctant because I don't want to be left again.

28 months ago

kat364

It has changed my relationship so much in the past 10 years. Now I know he loves me no matter what comes in our life. He has slept in the guest room due to my tossing and turning, Yet we are closer than before.

27 months ago

Shana

I can so relate to all of you. I was engaged when I was first diagnosed and he took off as soon as he found out what was wrong with me. I finally met someone that was understanding and supportive and we are getting married on Sunday but we have issues every once in awhile with intimacy. He still sometimes confuses my pain and flinching with me not wanting him to touch me and that isn't it. I love having him touch me it's just that it hurts so much sometimes.

19 months ago