New to all this....Advice?

Hi all,

I'm going to try to be really to the point behind this because my intentions are very specific.

Long before I really knew my wife she was diagnosed with Rheumatoid arthritis and did everything she could at managing and battling it with the GP she had, it's only since we got together and recently married that I said something clearly isn't right, everything he's given you over the 8ish years you've had this diagnosis isn't making much of a difference unless he's majorly upping your dosage of steroid injection. After going with and being firm towards the GP asking for alternative treatments, anything else we've not considered and general advice, he choses to stick to his guns but not till after he insulted my wife about the weight she's gained even though it prioritises itself in her knee and she some days has issues walking.

Regardless we took the advice given and tried the best we could with what we had.

However after recently moving to Wiltshire we moved her into a different GP, after seeing a man about advice for the same issue we always go to he turns around and does some blood tests and a physical exam and says there's a possibility it could be lupus. Now my wife isn't the most vocal about her conditions as it is and trying to get any info is like trying to get blood from a stone.

What I really wanted to know as a concerned husband is really this. I personally cannot begin to understand what she goes through day in day out, I don't have this condition and when I try to talk to her about it she gets really defensive or tries to bluff me saying she doesn't want to bore me with the details everyday.

I've already mentioned her knees having issues, her hips play up, she's recently been off work with depression and frankly I feel useless in trying to help

Apart from trying to keep her happy, comfortable and trying my hardest to get any info or see if she's in pain, is there anything I can do make her open up or feel better ?

It might sound ridiculous but any info can really help me out.

Thanks in advance

Matt

10 Replies

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  • If you want to learn/know about Lupus then message Paul@admin Lupus UK as they have lots of downloads and booklets available free .

    These go through how it can cause many problems including anxiety,depression and joint pain plus many more.

    I think everyone deals with it differently so what might seem like your wife being overly independant and shutting you out may just be her way of coping on a day to day.The fact you are trying to help and be supportive is wonderful but I think the more knowledge you have of the illness the more you may understand and work out how best to support her.

  • Yes please contact Lupus UK. You may also find a chat with one of our contacts useful. Best wishes Kevin

  • Hi Matt, my husband has Lupus and I have asked exactly the same question on here and yes the others are right plenty of knowledge about the condition will help but I completely understand your frustration and the feelings of helplessness. You sound as though you are already doing all you can and your wife is very lucky to have such a supportive partner. As awful as it is for the sufferer of this horrible condition it affects the whole family, so make sure you take good care of yourself too, after all if you are ill and drained you will be no good to anyone either. You will find great support on here and someone is always listening. Even with Lupus life is not all bad. Remember to stop and smell the roses. Very Best Wishes. Kim.

  • Hi Matt, it is wonderful that you want to help, I am sure your wife will appreciate it. I wonder if she cannot talk about it because she is finding it hard to accept herself and perhaps trying to sort out how she feels in her own mind before she shares with you!! I was diagnosed 3 years ago and my initial reaction was feeling like someone had swept the rug from under me - my future as I had imagined it would be was gone and my major concern was would I become an invalid and a burden on my husband and family so I just pretended it was not happening and cpresented happy face to everyone!! My body decided otherwise and I ended up in hospital so I had to re-evaluate. My life is different from what I had planned, but it is good 😊. My husband quietly and without question took on most of the heavy household chores so that I can rest when I need to and not waste energy - my family know that I sometimes have to take care of myself and the mostly understand - just being there for your wife "in sickness and in health " is brilliant and let her know you are there, today, tomorrow and every day - best wishes to you both

  • Hi Matt,

    The best thing you can do for your wife is to insist on a referral to a Rheumatologist. Neither Lupus or Rheumatoid Arthritis can be managed effectively by a GP as they don't have access to the medications that really work for these diseases.

    Repeated injections of steroids is not the way to manage RA. The push now is for early referral to Consultant care.

  • Six months ago, I REFUSED to go to a doctor, kept insisting I was just stressed out, and all I needed to do was cut back on smoking and take up exercising. No amount of pushing from my boyfriend made a difference. I was just out of shape and stressed - that was all there was to it. I just couldn't fathom that anything could possibly be really wrong.

    And then, four months ago, out of nowhere, my kidneys failed and I couldn't avoid it any longer. My biggest fear about opening up to my boyfriend about it all was that he would say "I told you so." Many things I can hear handling, that I cannot. It was really a big, big fear of mine, being told "I told you so!"

    Maybe reassure your wife that there will be no "I told you so", only support, only care. Or find ways of doing things that help lift the burden (things like chores she has a hard time with her knee.) Often times we don't need a push - we need an opening to start sharing. Clearing the room for her to not have to push herself so hard may allow her that space, that mental clarity, to finally get around to telling you how she really feels.

    All that said, please know that it's amazing that you care and want to help. So many of us have to do this on our own. By even asking these questions, you are already caring for your wife.

  • Please dont feel like you're not doing enough for your wife. Having someone she can always count on is so precious to your wife. Don't stress on the Doctors they are trained to help Lupus patients. Do your research on lupus so you can get a better understandfing of this strange disease. Your wife is going through a lot. Support her by being there for her. Give her a massage help with housework and running errands. Bring her flowers and give her all the love and support she deserves. I'm a single mom raising a 6 yr old autistic son. I don't have any help or support. I go thru lots of depression too. Trust me you are doing more for your wife than you realize. Thereisno cure for Lupus. Medication helps us cope. Stay strong and continue to be the special husbsnd you are.

  • Hi Author_ink

    Just read your post. It sounds like you have a difficult situation. To be on you own, have lupus and a very unwell son must be a real struggle for you. I hope you have family who lend a hand when needed.

    Lots of hugs

    Babs xx

  • Thank you so much for your kind reply. I don't have family help they all have there own lives. Doing everything on my own makes me stronger

  • Hi Matt,

    Thank you for sharing this with us and I am sorry to hear that your wife is experiencing these issues.

    Our website has a lot of information about lupus which you might find useful. For example you can request an information pack about the condition here lupusuk.org.uk/request-info... as well as have a look at various other leaflets we provide lupusuk.org.uk/publications/

    We also have several support groups across the UK where you can chat to people who are experiencing the same issues. The groups are useful for people with the condition but also for their families and carers. You can find your local group here lupusuk.org.uk/regional-gro...

    We can also recommend lupus specialists in your area. Don’t hesitate to send me a PM or to email me at Fabienne@lupusuk.org.uk if you would find this helpful.

    It’s wonderful that your wife has such a supportive partner. You might also find our leaflet on caring for someone with lupus useful. lupusuk.org.uk/wp-content/u...

    I wish you both all the best .

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