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

Dawn

 I was really surprised at myself.  When I was married, I always found myself talking about having Lupus with people in conversation.  After my divorce, I was hesitant to bring it up.  I guess I didn't want people to see me as damaged.  After awhile, guys would start to notice how often I said, "I'm so tired."  Or the fact that my neck and shoulders hurt all the time.  Once, when my current bf was rubbing my shoulder I jumped - and he really thought he hurt me.  I just told him "No, there's something wrong with my shoulder, no one has been able to figure out what's wrong with it."  (Which is true, to an extent.  Yes, it's related to having Lupus, but no one really knows WHY it hurts.)  

  Overall, most people are sympathetic.  I dated quite a bit before meeting the guy I'm with now, and no one ever seemed turned off by it.  They all had the same questions, "Is it under control?"  "Can you lead a normal life?", etc. etc.  I still don't think people can grasp the extent of it, however.  They think you're just tired all the time.  Which I do notice some people seem to find annoying.  For example, I can't go out and party or stay up late.  I can't drink a lot.  I have to make very minimal plans on the weekends.  If there are 3 events going on in one weekend, I have to choose which one I'm going to attend.  And if you're in a relationship with a really active person, I could see where that could get complicated. 

43 months ago

Lauren

i was also thinking about trying to find some guy to date with lupus also! ..probably hard to do, since its mostly girls.

but i was in a relationship my junior year dec 06, and then in february when things started happening, i was always tired and i could just tell he didnt know how to respond. i eventually broke up with him in july.. and i havnt had a bf since then. Of course, ive had my number of guys since then... but im having trouble with commitment.

Its just i feel like i cant give them all of what they "need" in a relationship. maybe its just that i havnt found the right person. Althoguh , lately i did meet this one that for some reason keeps wanting to be around me. He knows so much about me, for a couple months, and i feel 100% comfortable with him. i told him about my lupus a while ago, and he kinda understands.. but he listens. Which is a big thing.

he's THE reason why i made it through a couple weeks ago. For some reason, he has a way that whenever im with him, i forget all about how crappy i normally feel. Ive realized that when i surround myself with other people, i tend to do that. Its when im alone that things arent so good, and bad thoughts go thru my head. But it really is good to find someone.. there are some understanding people out there and ones that will do anything to see you happy :)

43 months ago

brm214

For me, Lupus wasn't a topic for the first date.  Or the second, or even the fifth.  So I would definately say, "No, not an icebreaker."  It plays a large part in my life, but it does not define me and it should not define you either.  It takes a special person to take it all in and empathize with you and what you've gone through.  After a great deal of time dating someone, when you feel comfortable, open up a bit.  But until then...it doesn't need to be a topic of conversation unless you feel the need to share.  8 years ago, I vividly remember being so nervous sharing all the complicated details of Lupus with the guy I had been dating for a few months.  To my surprise, he took it in stride and we have been together ever since.  My motto for dating, "if the person you are dating can't handle merely talking about Lupus and gets scared off, then they definatly would not have been able to sustain a supportive and lasting relationship with someone with Lupus. 

43 months ago

Gabbie

back in 2004 i had along distance online thing going with someone older and when i got sick he would call me and be like "am osrry your in pain" i got sick of that and broke it off.. withthin like  a few hrs i  made a account on match and got a few winks  um messages from guys .. one guy blew off  so i  was like ok what ever i sent  a wink to a local guy i was 20 he was soon to be 20 turned out he lived like 20 mins away,  finhised hs the same year as i did (02) and  i havent looked back we been dating for almost 4 years on our first date we talked about my lupus and  wow i was surpised he listened he asked questions ... out of all the guys i got messages from his message to this day still me makes me go " wow"

 

at first it was kind of hard though but am a bit of a fighter so we have learned alot from each other  he has always said  " am not going to pity you" and he hasnt  if am hurting he just goes ohh.. the last time i was in pain that wasnt lupus realted  ( i had a bruise on my knee)

i showed it to him and he was like "geez i can see that from here" lol

 

anyhow we done great!

43 months ago

Kylie

I have a hard time dating because of my lupus.  In fact I have driven men off on purpose just so I wouldn't have to tell them.  I've grown out of that now but I still have the issue where it is hard for me to talk about.  I don't want them to worry about me but at the same time I want them to understand that there will be days I don't feel like getting out of bed.  I guess its just a trial and error type of thing!

43 months ago

Gladys

I find myself getting depressed a lot & most men I've dated can't deal with that...Also, I get tired easily & don't like to go out all the time, so that is a problem to most of the men i've dated....and also I am a virgin, so some men that i've dated couldn't deal with that, but I feel there is no rush, I am still young and I know that God has someone for me & he will send the right one, I just have to be patient :)

43 months ago

Candace

The guys I have dated in the past have pretty much been really understanding about everything. There was one that couldnt deal with that fact that I was always tired. So that didnt last long. I'm still kinda seeing my ex bf, and he was with me when i got diagnosed. so he is super supportive. Always watching over me, making sure i take my meds and stay out of the sun.

42 months ago

Janine

I'm completely open about having Lupus. I don't make it an issue but I fail to see the point of not putting it out in the open. Eventually you will have to tell the person you are dating. I think it saves some heartache and pain later on. I am very lucky to have a boyfriend who truly loves me for who I am and understands that I have a chronic condition.
~Love, Janine

40 months ago

Crystal

I was in a serious relationship when I was diagnosed with Lupus, however that ended in part because of the Lupus and the way I felt and acted especially while on the Prednisone. I was heartbroken and pretty much gave up on dating. Then I met Ryan and he is amazing. I told him on one of our first dates about having Lupus and instead of running away, like I assumed he would. He researched it and came to me with tons of questions. It was really sweet that he took the time to understand it. He takes wonderful care of me when I have a flare up. I am very lucky to have found an amazing man!

35 months ago

Anne

For me, my lupus has been such a deal breaker.  I have dated someone and they didn't care.  They were very supportive especially when I got sick.  He would come over and bring me foods to eat that he knew I would be able to tolerate.  Other guys first time I got sick it was the don't call me I will call you or tuck tail and run don't look back.  So I'm to the point I don't say anything to a guy until I know how far the relationship is going to go.  If I stayed the night with him I would make sure I would take my meds where he couldn't see what I was taking or how many I was taking.

32 months ago