Has anyone found love after Lupus?

I am feeling a little disheartened today after my ex flew back from NZ to take me away for 3 weeks but we only lasted 4 days in Paris before he decided to go back to NZ. We dated before i got ill in NZ and i had to come home to my family for support as he didn't deal with it or take the time to understand Lupus but spent the last year chasing me again saying he wanted me back. I wasn't sure i could trust he would be there and asked too many questions and he ran a mile. Perhaps he wasn't ready to accept me and Lupus or wasn't prepared for how i would be.

It makes me feel scared now as i am 36 in Nov, just divorced from my husband (left him for the kiwi ex so kicking myself now) had a great life in NZ now living with my parents in a small village no mates and on benefits and wandering if anyone would ever want to be with me now. My mates said try dating websites when i am up to it but i don't know what to put on there as i used to have a very successful career in advertising and was so sporty and outgoing i just wouldn't know what i could offer a man and it would take a certain type of guy to take me and Lupus on.

I would love to hear some success stories of how anyone has found love since being diagnosed and any advice with dating. Do you tell them about lupus straight away?

Hope there are lots of happy Lupies in love cause that will really make me smile today.

Thanks

Hels

14 Replies

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  • thats a sad story BUT with every door that closes there is another one waiting to be opened do not think he is the one for you if he cant cope.......it is better that he goes. YOU are the most important person in YOUR equation NOT him.

    Be strong and go looking, the right person will be there xxxx

  • You are so right, he couldn't cope could he such a selfish coward as well and i feel more of a fool for giving him another chance after he didn't stand by me when i had a miscarriage as he had the kids for the weekend and i had to go stay with a mates sister, that was a couple of years ago now, before i was ill. He got round me a year later then and then another time. He has put me through so much heartache i don't think deep down i wanted him 100% because i could never trust he would be there but he offered me a great life in NZ again and bought his house with me in mind, almost got me a car, sent me gifts when i was in another relationship back in the UK last yr he didn't want anyone else to have me but when it came down to it didn't want me himself. My family are relieved cause they were against me going back and i am home with them now. my poor mum having to put up with my tears bless her. She should be enjoying her retirment with dad. Thanks for your advice xx

  • To answer your question " yes" I was married for 17 years, the last 4 were lupus horror stories . Heart attacks. Stroke , PEs in lungs, fatigue, joints, monster looking face. One day, she came to me said " can't do it anymore" life is too short . Me being oblivious thought she was being sincere , she knew what I was going thru. Nope what it meant was I was taking up too much of her life, being in / out of the hospital . We had a great marriage, something in her head , decided in sickness & in health didn't matter. I was pretty much deviststed. How was I going to care for a 11 year old and 7 year old? When 1/2 the time I couldn't take care of myself . Let alone children and a social life.

    But haven talked it out with my kids they were determined to do what they could to help. That was 9 years ago.

    A year and 1/2 ago, I met a woman who had an ex husband that is an alcoholic , much like lupus , sleeping a lot, not with it, she was familiar with sickness only this differed because she know its something I can't control and when I have good days I do what I can to be engaged and participate with the family .after introducing her to my kids, my daughter who was 15 @ the time said , this is the women I prayed you would find. She understands not just says she does but is there when I need her. And when I'm able , to be there for her.

    I'm not going to lie, there are people even friends that say they understand. Buy when it gets down to it, they run. I am positive there is someone for everyone. Only 9% of the population die alone. From what I read, that 9% is there choice. Don't settle, because real love has no boundaries ! You will see, just like I was told, someday you will be saying the same thing I'm telling you,you will tell to someone else. It's the law of the universe , if you have love to give , there is someone out there that needs it!

    Ps- here's karma, although I wish no harm on anyone . My ex was diagnosed with an autoimmune decease last summer . She can't get her head off the pillow and had no one to help care for her. Now that our children are older they have lives of there own and arnt around. She told my daughter , I see what daddy went through , but I was selfish , she was desperate to talk to me. But that's because the woman I told you about? We got engaged and I couldn't be happier. What comes around goes around. May take a little while , but when it does, I feels good !

    So don't you give up, there's someone out there looking to complete your other 1/2!

    And it will be the best love affair , the kind that are written in the books

    Many blessings

    Dave Tampa fl USA

  • Ah Dave, thanks so much for taking the time to share your story, that would have been devastating your wife not standing by your side through your hard times that's so sad but so fantastic that you found love again and you sound very very happy and it's great that your kids also recgonised that your partner is so right for you and you have their full support :-) Really really happy to hear that things do work out in the end, watch this space.....one day i will share my happy ending. Thank you for making my day

    Hels

  • I met my husband of 11 years already with a diagnosis of Lupus. I had been diagnosed 13 years at 17 and was really worried about telling him, I was 30 but he was only 26!

    I chatted to friends and told them of my worry, they gave me the advice that if I thought he was special i needed to tell him.

    I explained what I have and what the futures could hold for me and him if he stayed in the relationship. me in a wheelchair / no children etc

    I gave him a VHS explain what Lupus was (it was 13 years ago), he came back and said he'd take his chances as he loved me.

    We have been through lots together as my lupus has progressed, syrogens, migraines, strokes, and renal failure, but he has been at my side the whole time. We even have a beautiful little girl of 8 now.

    So the short answer is YES you can find love after being diagnosed with Lupus - be honest and up front at the beginning and if he is the right man he'll hang around.

    Good luck x

    Paula

  • Wow you really have been through it with the Lupus :-( but it does take the right guy to stay with you through these tough times and i am happy for you that you have had his full support. It takes a special kind of person to do this for us huh.

    Thanks for the advice about being upfront early on i will remember that when i am ready to start dating again

    Hope you are happy and in good health as much as poss

    Hels x

  • Yes there is! I met my husband when I was 37 and had just about given up on finding anyone. Think I was in a similar situation to yours and felt hopeless at the time. We've now been married over 10 years! Try to keep positive I know sometimes that is soooo difficult xxxx

  • Really wow that's so fantastic to hear congratulations :-) i have to pick myself up and be strong, and reading your story and the other people here has really spurred me on to not give up hope/

    thank you xxx

  • There is love to be found for us all :-) me and my partner split and i know a lot if it was down to the way i was. I was undiagnosed and i was all over the place with the illness. He slept around and i threw him out. I was so scared of looking again because not long after our split i was diagnosed. I met someone through internet dating just recently and we clicked straight away :-) then comes a few dates later you know you have to discuss it with him.. he handled it really well and has assured me he will not be doing a runner. He has also been on the lupus uk website to help him understand. My motto is if he cant take you at your worse he def cant take you at your best. You go girl and have confidence xx

    Gill

  • i like your motto, a lot of truth in that i think i will say that to myself that 'he doesn't deserve me at my best' really happy to hear things are going so well for you after what you have been through and good on you for being strong and kicking out your previous partner. I have to find my inner angel of confidence again. It's such a strange illness that little things give you big knocks just when you think things are going well but i have to get myself in a better position so if it happens again with a guy my whole world doesn't fall apart. I would love to be well enough to hold down a job again and be able to support myself and build a life of my own then i may let someone new in. I suppose i shouldn't feel bad i am living with my folks again as i know people often have to move back home to save for a mortgage and things. I do feel lucky to have my family.

    Wishing you all the best full of happy and healthy times :-)

    Hels

  • Hi Helsnz

    I am happy to tell you that I am so in love and happy I feel like the happiest girl on Gods green earth! I had been in remission for over ten years when I met him and was getting very few effects from it, I did tell him I had it and it would limit a few things I do. I am a biker an will be honest I actually noticed the bike he was on first! ;-) Back then I had long blonde hair and a decent hour glass figure that filled my leathers well. A few months into the relationship I started to lose weight - unintentionally, he told me he loved me as I was and didn't need to lose weight when I told him I was not trying I went into more detail about lupus as I had a few more symptoms of an active flare starting up. Gradually I lost all my long blonde hair, luckily being surrounded by lovely bikers who shave their heads and having a great sense of humor it was easy to make a joke of it and boast about getting their look naturally (it's not the first time I've lost it fingers crossed it comes back again) I had to get new leathers as my old ones were much too big and did not look as good. It has been a joke in the local pub and within our friends that I am allergic to him but love him too much to give him up and many jokes come from that - it helps me cope. My partner has been wonderful while all this goes on he gives me hugs and words of encouragement, he rubs my creams on or sprays me when my skin is so bad that creams can't be used. He takes me away on his motor bikes as I don't have a licence due to my health we go camping regularly at motorcycle rallies with all our friends and the club we belong to. It is funny when I take my crash helmet off I just straighten my bandana, or get told I'm naked as it has come off inside my helmet (that gets me some funny looks;-)) many other women have to go and sort their hair out which means we can sort our camping site out straight away.

    When we are not doing rallies we have a great social life and frequently go to see live bands, there are several places close to my house that have live bands so we are lucky and often have a choice. We also share the hobby of photograph and go out on photo-shoots together which is interesting as we go to the coast sometimes and have a great time. Despite being all wrapped up as I am photosensitive we have great fun whatever we are doing and after vowing to stay single after two failed marriages I am so pleased that one of my friends pointed out that it might be third time lucky so I gave him a chance as I am absolutely blissfully happy and he makes it easier to cope with my lupus and at the moment is helping me to arrange a fundraiser I am doing in two weeks time for lupus UK as I am knackered. :-)

    Please don't give up on love you never know when it is waiting round the corner, everybody deserves to be happy sweetie it makes the bad bits of life just a bit easier to cope with

    Madmagz x

  • Hi Madmagz,

    I love your story, such an inspiration and made me smile and feel optimistic :-) Thank you. It's great that you both can share the same things like photography, camping, biking you should like you are made for each other that's so so lovely. I do hope that your Lupus is behaving itself and gone back into the cave but it's fantastic to read how supportive your fella has been all through is. Really has given me hope, thank you so much. I am not giving up, definitley not now, not ever. I have lots to offer despite Lupus and the right guy will appreciate that

    Woohoo you have made me smile and spurred me on

    Hels x

  • YES.

  • Hi Hels

    So glad that I have been able to make you smile that alone has made my day a better day, my lupus is pretty good right now but unfortunately I do have quite a severe case of shingles but that is easing off a bit now.

    Never give up hope love

    Madmagz x

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