Newly and Happily married to Lupus

Hello, i am looking for support.

My husband has been diagnosed with with systemic lupus.

I am looking for supportive wives out there, who can help me and give me advice to make this chronic disease easier on my husband.

Thank god hes not complaining of anything right now and hes working but hes had a flare before with a renal insult and its under control.

So please Help me

And share with me ur story

Happily Married To Lupus

11 Replies

  • I think its wonderful that you are looking for info. The biggest issue for me living and working with Lupus was worry. What If I'm sick again, can I do my job properly, should I tell my colleagues what will they think and will I get the sack. Then you're too tired to socialise and take part in family activities that leads to will he / they still love me? Then you get depressed and anxious on top of all the other symptoms.

    However as a wife / partner / carer it is important to make sure that you have a life too. Make some time for yourself :)

  • I never have time for me until my son goes to school

  • My wonderful husband cares for me when I am sick, and we arrange our social life to accommodate my illness, so often making lunch dates rather than evening, when I tire easily. We talk often about how best we can manage "bad" days and sharing is really important. However, there is one sadness, and I have not seen this mentioned on this site and perhaps it is seen as a banned subject, but I find that our sex life has dwindled to almost nothing, as he says he is afraid of causing me pain. I keep pointing out that making love releases good endorphins and actually helps with pain relief, but he is now so scared that we miss out on this important part of our lives.

    So, do, please keep the passion rolling. Also, as has been said, allow space for yourself. My husband belongs to two choirs and I see this as most important for him and encourage his social life.. I do hope this helps.

    He is a very lucky man to have you as his partner! Xx

  • Hi musicteach. Just wanted to say I think it's good to bring up the subject of sex. It's rarely discussed it seems and not easy to mention in a rushed Drs/Rheumy appt and yet such an important part of a relationship. I have quite a lot of hip pain as part of my Lupus experience and I have worried in the past that this will impact on our sex life. My husband too was worried about hurting me. However we had a good chat about it, discussed which positions were easier for me, and I promised to say if it hurt. Since then sex has been better than ever and I feel much closer to him through it all. (If the pleasure outweighs the discomfort which it generally does I don't mention it as I think it helps him to relax about it!). I do hope things improve for you in this area too. Xxx

  • Thank you, Tinksie...much appreciated! We have talked at length, but it has become a bit of a Pavlovian response on his part, so I am exercising patience and attempting to chat about it in Ann confrontational way. In all other respects he is the perfect man and my very best friend! Xx

  • A non....bloody predictive text!

  • Hello, my husband Also has Lupus .

    And yes you do feel as if you're married to the disease rather than the person. It can be tough when hubby is having a flare , our latest trauma was Angina attacks.

    I think you need to be strong for your other half and also look after yourself.

    I know it's a difficult balance between wife and carer because at times you feel as if caring is your only role , but try and make some time for yourself .

    I am lucky I have a strong supportive family who support us both .

    We are now retired so at least we don't have the worry of him fighting to keep working, it was a struggle during a flare for him to work , poor thing.

    I think it is important not to let this nasty disease come between you and your husband .

    Hope you are coping and that hubby is not getting too many symptoms.

  • I'm not a wife I'm a widow. I've been with lupus for a year. If I had a husband with lupus I'd give him lots of messages. His joints get stiff at times. Have your husband take lots of hot baths. That helps the sore muscles. Make him take his meds. And watch his diet cause the meds will put weight on you. On days when he's not having a flare up take him out for dinner or a movie. Good luck and continue to love and support your husband. He is lucky to have you. All I have is my adult daughter to help me.

  • Hi Marriedtolupus,

    It is great to see you looking for more advice on how best to support your husband. We have a booklet called, 'Caring for someone with lupus' which you can view and download at I hope that you find it helpful.

  • Hello, you'll find some wonderful helpful people on here.

    I don't have a partner with lupus, but my late sister fought it for 17yrs, and as others have said already, the suffering and challenges affect everyone including you. Carers are often easily forgotten.

    I hope that things will be okay, but you have to be ready for the possible ups and downs, the arguments, the things said in heated moments because of the drugs, the pains etc. Life isn't going to be the same. Lupus doesn't care if you've got plans for Xmas, holidays booked, birthdays and major events. It can start to take over, dictate and complicate life.

    My sister was struck down when I was in my first year at Uni. I nearly jacked in my degree because I couldn't stand not being there for her. But she told me not to. As years went on, I made life and career decisions that meant I was always close by. All those typical exciting - sometimes reckless - things you are supposed to do in your 20s-30s, I chose not to. It's like I turned 50 before my time.

    I felt guilty talking about the good things in life, because they made her sad she wasn't able to do such things. She was in her final year at Uni, had always looked after herself, didn't drink, smoke etc and had her whole life ahead of her, only for lupus to strike her down and crush her ambitions, confidence and self esteem. The mental impact is huge.

    But like I say, not just for her, but to you. All the times I worried if she'd make it through surgery, if when visiting hours were over, that's the last thing we would ever talk about. And the abject fear of helplessness when all you can do is cradle them until the ambulance arrives. You learn that sometimes just being there beside them is all they want. Don't need to say anything, just be there.

    And now the boot is on my foot. I've gone from carer to sufferer. Fate can be so ironic. But we fight on. Take care, of both of you.

  • Absolutely understand your comment about feeling older than your years, we are in our 60's, my husband has lupus SLE and we are virtually housebound , some days I feel as if I'm in my 80's .

    I do go out on my own to church and church events but always feel like I should get home to hubby , in case he needs me .

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