May's Blog Topic

May's Blog Topic

Our Topic of the Month for May is ‘Discussing lupus in a relationship’. Discussing a chronic illness for the first time with a partner can be a very difficult thing to approach. We’d love you to submit your experiences. When did you first discuss your lupus with a partner? How much did you tell them at first? How did you start the conversation?

We’d really love to hear from some men with lupus too on this topic. Also, if you’re the partner of someone with lupus, how did you react when you were first told?

18 Replies

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  • hello paul

    i have a brilliant caring and understanding husband we have been together for 18 years, i was diagnosed january 2012 so very recent but like most lupus patients i had symptoms long before diagnosis.

    my husband has been with me all the way and during all my bad times, before diagnosis he has listened to me and let me cry,get angry,shout ,pour out all my troubles night after night.

    it has been a long journey but it has brought us closer together i could not have done it without him and my children.

    when we found out he was with me at the hospital and took it very well as he now had a name to my symptoms and we could move on and finally deal with it.

    my husbands reaction was positive he said nothing negative he would not believe that life was now over just different, and he new he would have to help more around the house and take over more chores (i laughed at that one) he has never once complained and i feel very fortunate.

    i have kept nothing from him he knows everything and supports me when im down and loves it when im happy.

    i feel very lucky

    debs

  • Thank you Debs for sharing this. It certainly sounds like you have a wonderful husband.

  • That is lovely to read, gives us hope!! God bless you both xxx

  • From day 1 of meeting my partner I researched Lupus to get an understanding of the illness. It pointed out the short term/long term effects of the illness & medication but no matter how much reading you do, you can never get a true understanding of personal experience(many ailments) or the fatigue experienced by the sufferer.

    There is a constant up & down in energy levels.

    I love & support my partner 100%. Sometimes I struggle especially when my partner is tired & I feel unwanted/that I get in the way when all I want to do is help. This is when communication is necessary. It's not the finding out, its surviving, working at a future & being there for each other.

    Together we'll fight this illness :)

  • Thank you for sharing your experiences as a partner of someone with lupus.

    It sounds like they are very lucky to have someone as supportive as you.

  • i met my partner 4 years ago,i didnt know i had lupus then but had been ill for years especally with anixety/depression,when i met him though i fell head over heels and was so happy the illness seemed to go on the back burner,we went all over,trips to seaside,london even abroad!! although id had tough times panicking id hid it very well, dont ask me why or how i really dont know, i think maybe because i didnt know him like i know him now also he is asian and the women in his family dont ever talk to the men about health issues or womens troubles so before he met met me with all my troubles he didnt know much about women!

    Two years into the relationship i had a bad breakdown,i couldnt stop having panic attacks all day everyday,he seen a very different side to me,we couldnt go out for a meal,cinema etc iwouldnt leave the house,a good few months passed and things got back on track,i was more open with him but he just couldnt understand why i couldnt "just chill out"

    When i was going through the process of finding out i had lupus he kept saying dont worry theres nothing wrong with you,youll be fine,you worry too much, he was sat at the end of the bed when the doctor came to me 4 hours after having a kidney biopsy and told me i had stage four lupus nephrisis,i remember looking at him as if to say told you! ever the positive though he says take your tablets and you will get better,if only if it were that simple

    the past year has been so hard excepting this illness,the steriods made me pile on weight have cheeks like a hamster i didnt put make up on again until christmas!! but hey he still calls me gorgeous and sexy, sometimes i wish i had his naieve mind but i dont and at times that has made me worse constantly worrying what might happen to me

    he thinks i dwell on things too much and i should trust the doctors more and also in his faith you except things that are out of your control

    although he doesnt understand my illness that much and likes to play the joker sometimes when we are cuddled up in bed he will kiss me on my head and say "it must be awful for you" i love him so much and i know he loves me so much, we plan to marry and hope and pray god blesses us with at least one child,last year i said to him i would let him go to find a" healthy " wife who could give him 10 children,he never answerd me and he is still here :-)

  • Thank you for sharing your experiences.

  • hi there, i have had lupus for 24 years in the beginning, it was very hard for my husband to come, to terms with it, i think the tiredness didnt not help because the sexual activity wasnt brillaint, but over the years my husband, has become more understanding, he now realises that in the afternoons i need to take a rest and now is happy to care for me when its needed. i also think that because we have been together for 26 years, we have had to work at it.it has been ups and downs, he get angry with people now who say i look as fit as a fiddle, and i have to try and calm him down. also i have two grown girls and i worry they will get this awful disease. 1 daughter already has arthristis, mood swings havent helped either over the years. you want to hibernate some times i dont go out often because of the facial rash i have. makes you feel like a monster face all red and sore, and constant remakes like how much time did spent under the sun ray lamp, all i can say is thanks to all my friends and family that there is a understanding of the condition that i have

    angie

  • Hi Angie. Thank you for sharing your experiences with us.

  • Hi everyone, it's been really positive to hear about your great husbands/ wives who all sound so supportive. As a youg single woman of 24 I constanly worry about when I should tell a date I have SLE. I was diagnosed a week before I turned 21 and my boyfriend at the time wasn't the most supportive. I cried down the phone to him after on the day I was diagnosed and he said nothing much apart from 'I hope you're ok'. He broke up with me a few months later, no explanation. Since then I've always thought my Lupus might have had something to do with it. Since then I've always been open and willing to talk about my condition with men that I've met, so they understand what I go through, and to hopefully prevent that situation happening again. It's just difficult to decide when to tell a person you like about this. As said, it's been really nice to read all the great partners you have, which gives me hope about finding a partner who is willing to support me through the ups and downs of this illness.

  • Anne. It's not the lupus that's the problem it was the boyfriend! Better off without people that don't understand, especially the ones who are supposed to be the closest and care for you the most. You are a beautiful young lady, lupus is only a small part of you as a whole. It doesn't define who you are. Be happy, mr right just hasn't met you yet! Xxhugs xx

  • Oh and Anne, I was engaged to be married and I broke it off because I realised the one man that should have stood by me didn't actually want the 'hassle' if I got Ill! It was hard but it was for the best. In time the right person will come along. Xx

  • Hi most of my friends and family found out as I got diagnosed including my boyfriend at that time. That boyfriend did not last (probably not related to the Lupus) and I even lost a few friends (including two who I thought were really good friends) who could not cope with me and my "unpredictability" /cancelling arrangements because tired etc, and the fact it impacted upon my mental health

    Since diagnosis I have always just been up front with people I meet about the fact I have Lupus and my current boyfriend/partner totally accepted it as part of me being me right from the start. Initially I got to know him as a friend & he just knew I had Lupus and I gave him a brief intro re that it made me exhausted & I had been retired through ill-health because of it. I left it up to him to ask any questions

    Once we decided to be together in a relationship I pointed him towards the charity Lupus UK who have excellent info and this really helped - I left it up to him to do what web research he felt he needed, but I would always be willing to answer any questions he had. I would also up date him from time to time on how my symptoms impacted upon my lifestyle when I felt it necessary, and I slowly learnt not to be affraid to be totally honest about my bad days /ask for his help if I needed it etc. I think the right partner will accept your Lupus but you have to also accept that it can be difficult for everyone who cares for you to understand and cope

  • Thank you so much for sharing your experiences.

  • I have always been honest with anyone I have been seeing as, I have so many hospital appiontments it would be hard to hide plus all the drugs I take. So I have told boyfriends from day one and to be honest this has never been a problem. My hardest problem was admitting lupus was beating me rather tham beating lupus. Just be honest with them and tell them everything,

  • Thank you for sharing your experiences and advice.

  • Before I was diagnosed with Lupus I had a diagnosis of ME and my husband found it really difficult to understand - he couldn't accept why I was always tired and complaining of aches and pains. I tried to pretend I wasn't ill and lay in bed until he came in and then get up and smile and pretend I was fine and make his dinner. This didn't go on for long before I had a bit of a breakdown and ended up on anti-depressants. Our relationship was rather rocky at this time understandably.

    Eventually I was diagnosed with Lupus and this really helped him to acknowledge that I was really ill and he looked at some of the lupus leaflets. He struggles still with how extremely restrictive it is on our life, but he has completely turned around his attitude and now he's soooo understanding and loving. He's cooking dinner right now, and he cleaned the house this weekend. He does the shopping when I can't and is really supportive. He now helps me by explaining to others why I can't do what they ask, and helps me to pace my life.

    Recently we watched the lupus uk dvd together and this marked another step towards awareness and understanding from him and I'm grateful for this.

    How I feel so lucky to have the love and support I need in my relationship -and we can still laugh together about life :-)

  • Thank you for sharing your experiences.

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