My wife just been diagnosed with lupus

Hi everyone. I've just had a call from my wife, her rheumatologist has officially diagnosed my wife with lupus, I'm absolutely devastated not for me but for my wife. It's not that this diagnosis has come from no where, it's the fact that she now has a consultant that can help her ( hopefully). Over the years the doctors said it was M.E and fibromyalgia, I'm aware the symptoms are similar but over the last few years it's been really bad.

I'm currently working away from home when she told me the diagnosis. hearing her fall apart over the phone was really hard to deal with. She's just turned 28 but has really been suffering for the last 8-10 years. I'm after advice really, about your experience in suffering and how I can best help her cope with living with the condition....

19 Replies

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  • I'm sorry this is a difficult time for you both, I think it's great that you've come here for advice and support, it's that proactive approach that will really help you both. I'm new here myself but I'm hoping you get some help and advice you can use. All the best and keep posting :)

  • Hi and welcome .

    If you haven't already do please contact Paul@admin Lupus UK and they will send out useful information regarding most aspects of Lupus so you can both have a full understanding of the condition.

    Getting a diagnosis can be the first step to help,support and medication which will hopefully over time improve symptoms and give some quality of life back.

    Many of us on here have had lupus and associated for years and years so have probably been through most things that this illness throws at you so are more than happy to help offer advice and understanding or just a listening ear.

    It is good that you want to support her and hope to hear from you both soon

  • Hi 86darrenbrown

    It's very sweet of you to come here and being proactively approaching this. I developed lupus symptoms from a bad miscarriage last year and was diagnosed early this year. For me I was very nervous and upset when first diagnosed, googling all the time and this made me even more upset since the worse case scenarios are online.

    In a way it is good that an official diagnosis is given, the only difference for your wife now vs. a few years ago is that:

    1/ she has given a name for what she's been feeling

    2/ she can now start healing as we know what's going on.

    This means things will be managed and will start going the right direction!

    An important lesson for me is that lupus is different for everybody. Some stuff applies to you but not someone else. it's good to be informed but not to let the disease define you as a lupus patient. I even had flare brought on just because I was over-worried.

    My husband has done a great job helping me look at the bright side when I am down, keeping me as relaxed as possible as it is important for lupus patient to stay stress free. It is easier to say than done but it is possible.

    Good luck to you and your wife. xx

    Littlegrass

  • This is a lovely community and you will get loads of support and help.

    For my part (as a non-lupie) can I suggest you go and have a read of Despite Lupus, a blog by Sara Gorman who was 26 (I think) when she was diagnosed shortly after she got married. She runs a business as well as her lupus work and has had 2 little girls. Her story shows a lupus diagnosis does not have to be the end of the world:

    despitelupus.blogspot.it/

    Congratulations on your action tonight - you will be a great support for her and she is a very lucky woman!

  • Thank you for the reply. I will have a read of the blog before I get back home. Having time to reflect on the diagnosis, I can honestly say we as a family have been living with the condition for years, it's a condition that affects every member of our family. Big thank you for the support

  • My niece was diagnosed with lupus at 26 and by the age of 30 had two children plus a PhD. She struggles sometimes but she is making a great life for herself.

  • Hi,

    I find that I can usually cope, but on my bad days, my husband knows a good hug, reassurance, and usually a joke, (often a really bad one,) bring things into perspective.

    It is like a dose of happiness.

    Just knowing that he is by my side and loves me no matter what, is far better than any medication.

    I have put on weight, and my hair has been effected, but his support and understanding makes a world of difference.

    Being there for me, and understanding, is the best support, I could ever have.

    But remember, it is not always going to be easy for you, as it could mean you have to adapt your life too.

    Gather Lupus information, that way you can start to understand the many things it can throw at you, and maybe go to the specialist appointments with your wife on occasions for extra support.

    (I prefer to go on my own now) but that is another decision you can both make.

    Just take things as they come, and between you make the most of each situation.

    Best wishes to you both

    Sandyb

  • Big thank you for taking the time to reply. As you've just said it's a condition that affects your whole family... big hugs 🤗

  • Having such an understanding husband who hears her and has reached out online is a great start to supporting her.some people don't have supportive families as they can't understand cause they can't see the illness.being there for her or making sure u do what u can for her b 4 going off to work.making snacks up for later or making sure her medication is accessible - sometimes pain / weakness can stop u from being able to open things teach things.it's those little tasks that she 'll appreciate.

  • Hi Darren

    I am 37 and was diagnosed last week with SLE, Sjögren's syndrome and AS. I live alone and have found this site extremely helpful. You may want to ask your wife to join?

    Has she got a Rheumatology doc? And if so, she should have been given an advice line number for any questions or concerns.

    The main thing is listen your wife, you won't quite understand how she is feeling but it is a comfort to know ppl are listening and not just thinking she is whinging. It's a massive step tomaccept the diagnosis.

    Advise her to read up on the type of lupus she has been diagnosed with as it will help and to share these with you and family.

    Hopefully your wife's treatment will start shortly, I am in steroids and hydrox tablets.

    Take care

    Linds

  • I felt the same way when I got my diagnosis. Then, I adjusted to the "new reality" and now that I'm finally on the right meds (took me about 6 months to get it figured out). I'm SOO much happier. It's not a death sentence, but it unlocks the key to why you feel so bad. I wish I had the diagnosis several years earlier as well!!!

  • I'm so sorry that this is happening to both of you. I'm newly diagnosed myself, living with my boyfriend who has also had to pick up some extra tips and tricks in caregiving and support.

    1) Above all, believe her. Believe her when she says she's having a bad day. Believe her when she's having a good day. Believe her when she says something is wrong, or that something is working. It gives us back a tiny bit of personal autonomy, of which we desperately need.

    2) The other poster who recommended making snacks was spot on. Food management is a HYUGE part of lupus and our fatigue can sometimes make it difficult to feed ourselves properly. Not eating the right foods or at the right times can cause symptoms or even full blown flare-ups.

    My boyfriend does all the cooking and while that's not feasible for everyone, I am always grateful when I open the fridge and see that he's prepared snacks for me for the day.

    3) Do concrete things like chores and errands for her. It will help her mental health state to have a clean home with a partner who is willing to take on the work to help. And lupus can take away the ability to walk and stand for extended periods of time, so grocery shopping and whatnot can really take a toll. Doing these things for her shows that you understand just how hard some of these symptoms are.

    It's beautiful and wonderful that you are asking for advice.

  • I posted my reply and then saw yours, quirkytizzy. Our answers are spookily similar, don't you think?!

  • I'd say that the most helpful things are:

    1. Just to be around. My worst times are when I am unwell and alone. Not because I need the other person to DO anything, or talk, or cwtch, but just the comfort of having someone around sharing the experience.

    2. Acknowledgement that sometimes I feel crap. If I say, "I am so tired of feeling this sick", I don't want the other person to say, "Well, have you taken your tablet yet/been drinking enough water/made sure you've written it ll down for your GP appointment tomorrow". I just want to hear, "Yeah, it's really tough at the moment." (this is a bit alien to me, as up till now, I have always been a bit of a 'fixer')

    3. Doing little tasks - things like putting the washing in the machine, bringing a cup of tea. Stuff which costs a healthy person next to nothing, but which can feel like a terrible obstacle when you are ill

    Try not to worry, you will have plenty of good times together despite lupus.

  • I'll echo number 2. Sometimes I just need acknowledgement of the issue, and anything else becomes just another Thing I Have To Do/ Think About that I don't have the energy for.

  • Exactly. As if I don't spend enough time already worrying!

  • Hello and welcome. Sorry to hear about your wife. I think you've impressed us all by your post. You're obviously a keeper and with your caring attitude you will get through it together. Hearing that diagnosis is daunting and frightening etc. But everyone's lupus journey is different. I was 39 when diagnosed, 3 years ago. I am married with 3 children. I am lucky that my husband has been amazing and extremely supportive and understanding. He reads book etc that we have bought from lupus UK. He knows when I'm not well and offers help - cooks or hoovers or whatever I ask of him. And he gives great hugs. Lupus effects the whole family but it makes you stronger too. Use this site. Maybe your wife would like to join? Also, I recently got referred to the Rheumy nurse at my local hospital. 3 years late really. She is lovely. Very understanding and patient and ready to listen and talk things through. She has more time in appointments as well. So find out if your wife's hospital have one. Use all the support you can get. I wish you both well.

  • Thankyou for your support it honestly means a lot to me

    Up until the diagnosis, It was really difficult at home between us, to the stage where my wife would ask when I was next working away.

    We never spoke and always argued. The only time we spoke was when asking if each other wanted a cup of tea.

    The thing is. With my wife suffering for so long , it became a normal situation between us, and that was the way our relationship evolved.

    Having two children and the stress of me working away occasionally, piled on top of all that LUPUS, I can now reflect back as to why the dynamics of our relationship changed.

    Then the day of my wife's first appointment with her rheumatologist came. She was given a steroid injection and told if it's definitely lupus it should ease the pain,

    well the next day I was away for work.. I got a call in the morning saying "Darren I've got no pain". Apparently she lay there for a while, not wanting to move incase it started hurting again

    She eventually got up and we FaceTimed. The first thing I noticed was how happy she looked. I missed looking at her smile.she had no headaches or migraines It lasted for around 35 days ( pain free) until the migraines came back last week.

    Seeing her suffer again, and comparing it to a month of happiness really has hit home. LUPUS is a debilitating condition, there are no scars, and no cure. We've just got to manage the condition as a family

  • Hi 86darrenbrown,

    It's lovely that you've joined for some advice from others, your wife is obviously very lucky to have you! I'm glad to see that you've received loads of brilliant, supportive comments from other members of the community already.

    We have a booklet called, 'Caring for someone with lupus' which you may find helpful. You can read and download it at lupusuk.org.uk/wp-content/u...

    If you need more information about lupus and LUPUS UK, we also have a free info pack which you can request or download from our website at lupusuk.org.uk/request-info...

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