What is my partners role in this situation

Hi, I have recently been diagnosed with sle, my partner and i are finding it both strange and dificult to come to terms with all this. I have a lady partner who is very caring, but is confused and asking what does this mean to her and what is her role in this situation...what is she supposed to do?? Her questions not mine....I cant give her the answers because i dont understand what is happening myself. Does this make sense to anyone out there. Can anyone tell me what i can say to her. I know she loves me dearly and wants to do anything that is neccessary to help me. Im really struggling, ive always been very independant and not used to asking anyone for any help...Also known as stubborn!

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  • awww T i understand 100% as when i was diagnosed i had the same thing from my partner (altho he decided to deal with things in his own way and walk out of my life!!!)

    the best she can do is to change NOTHING be the woman that she has always been to you, love you the same way, support you in the same way, want you in the same way.

    I am now with an amazing man who loves me unconditionally and is kind and understanding making me stronger emotionally which has the knock on effect of making me feel good about myself which in turn helps you deal with the hand you have been dealt

    be happy and be in love xxxx

  • Thank you i have just read you answer to her and you have been a great help to us both..its going to take some time to register this stuff, but i want to stay as positive as i can, i know that me doing that will benefit us both..

    thanks again for your kind words

    stay happy

    T.x

  • There is a DVD from Lupus UK that you might want to buy,

    you and your partner will both benefit from it.

    There is also books.

    Lupus is a complex disease I have had it for 21 years, to this day my Husband does not fully understand.

    Take each day as it comes,and you will both learn what and what not

    Hope this helps

  • I was diagnosed three years ago, when I hadnt been with my partner for long, so I always tried to play it down. Trouble is that has backfired on me as he does not realise now how awful I feel when I have a flare. Just keep talking to each other and dont make the mistakes I made.

  • My husband tends to carry on as normal and keep busy with his work. He does not fuss me or treat me like an invalid and he doesn't do things for me unless I ask. But if I don't feel well he is understanding. Sometimes he is puzzled, for instance, he can't really understand my reluctance to book up to do something ahead like a holiday in case I'm not well. It is the fact that I am up and down that is difficult for him. He also wonders whether he should know about my medication in case of an emergency and asks me for a list. I always try never to stop him doing things that are important to him like going away for work conferences. We used to go on long walks which we loved and when I could no longer do this I suggested that he found a friend to go walking with. Initially he said he wouldn't go without me but I insisted and he now goes for 5 days a year with a friend. This stops me feeling guilty.

    Anyhow after 18 years of living with lupus we get along pretty well. I love him for it because I would find it so frustrating living with someone with lupus!

  • Thank you for your reply jude, can i ask you a question, you have lived with Lupus for 18 years, how is it diferent now than 18 years ago.How have you changed over the years, compared to a lot of sufferers on hear that ive read, my symptoms are not as severe as some of them...but will that change. Im sure i have asked you an impossible question, but being newly diagnosed only a month ago...Im struggling with getting my head round it all. I suffer the kidney pain, fatigue, and joint pain...but am continuing to work at the moment. altho i am a butcher and work in a very cold enviroment...

  • I have reached a state of calm acceptance. I have learned as much as I can about the illness and this helps with my sense of control. I have done the Expert Patient Programme which equipped me to manage my condition - it was a wonderful course. Early on I was always hoping that I would return to my former state of health but it was not to be. I am happy now and appreciate the good things in life. I have also learned to look after myself better.

    Its not a good idea in my view to struggle too much. Your body is fighting the auto-immune response and you need to give it a chance rest and recuperate. You may like to evaluate whether you job is good for you and make some changes. Stress is very bad for lupus people.

    We are all different. I have a friend and her kidneys have been affected but she has continued to work as a solicitor and copes very well. Others have to give up work. We don't know what might happen in the future. I have met those who have been in remission for years. It's a funny old illness!

  • Thank you all...it is nice to chat to some like minded people. Allbeit that we are forced into being so by this illness. I hope and think that positive thinking is my only way forward for now anyways.

    bless ya s

    Karen

  • Google "The Spoon Theory" . Read with your partner. I, too, am newly (July) diagnosed, and we are finding our way. I think your partner should always have a list of your current meds-lupus or not-in case of emergency. The thing I have learned to do that has helped is to listen to my body. If you are feeling tired, rest. It is VERY hard to do this!! I'm working on the asking for help part. I have asked. I have said this: "I am going to need you to help more around here, ok?" four times in four months, to no avail. I will keep asking. Stress and exhaustion are your enemies! Hang in there, it isn't all bad.

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