My partner has lupus

[Little5]

Hi, so I’m new to the group and have joined as I want to learn more about how to support my partner who has lupus.

She’s told me she thinks she’s in the beginning of a flare but I’m not sure how best to support her.

Any tips are gratefully received

[chocolate_girl73]

Hi, I'm new to the group too and have been a sufferer to the last 10 years. I found patience and understanding invaluable. It's so difficult to make a non-sufferer understand how it feels to be having a flare. You have no energy, regardless of how much sleep you get. The joint pains are unbearable, stopping you from performing day to day tasks normally. Plus you get cranky, annoyed that you can't do the things you want to do, that it's tough to get a diagnosis and the right medication. Looking at everyone's stories, it seems that different things work for different people, so all you can do is make suggestions, support your partner, listen, let her rant or cry if she wants to.

I can imagine it's tough being a partner as well as a sufferer, everyone's lives are affected. I can only wish you both all the best and to keep posting and tapping into the wealth of advice found on this forum.

[Hamptons]

Be supportive and be there. But, always make them feel like the person you fell in love with. Laughter, patience and a sense of safety works for me. I worry about how my illness impacts my partner and hate it when it stops us doing things. But, my partner always makes me feel positive and finds a thing that we can do, even if that is a movie on the sofa. He heats my wheat bags and hot water bottles that ease the pain and is chivalrous and carries bags etc. But, letting me feel like me, the person he wants to be with is the best gift.

[Little5]

Thank you both for taking time to write your comments and suggestions about your personal experiences.

I really appreciate your advice and will be checking back regularly on the forum for support and guidance.

[puffyface]

Lucky her to have someone as kind as you to help her. It’s really hard to put up with us sometimes!

[Chanpreet_Walia LUPUS UK]

Hi Little5,

Welcome to the LUPUS UK HealthUnlocked Community! It's so lovely that you've joined the forum in order to provide extra support for your partner. We offer a free information pack which you may like to download or request at lupusuk.org.uk/request-info...

You have been given some great advice from other forum members :). You may find our blog article on lupus and relationships helpful - lupusuk.org.uk/lupus-and-re...

Stress is an important trigger of lupus. Stress can exacerbate symptoms making flares worse. We published an article on our blog about stress management and relaxation which I hope you and your partner find useful: lupusuk.org.uk/stress-manag...

Please keep us updated, wishing you and your partner all the best.

[Roarah]

What a wonderful, supportive partner you are.

I have been on both sides of illness. My husband was diagnosed at 50 with rectal cancer three years ago and I had two massive strokes in my forties last year and have a history of lupus but have had a 27 year remission from any major flares. I promise that you as the partner of an ill person have the much harder role. I much preferred being the patient to the partner. My worry level was ten fold when my husband was so ill. My responsibility to keep my end of the household chores was increased by lightening his role. I stuffed aside my emotions, fatigue, worries etc so all he and our child saw was a happy face when inside I was struggling with fear, exhaustion, feelings of inadequacy and even lots of resentment at times. I wish I had gone to support groups because I was drowning and never wanted to stop being the supper wife who should do it all for I was not the ill one.

This attitude did not help my husband and it lead to me being so stressed it hurt my own health. So please consider a support group if one exists near you. The care givers need to put their own oxygen masks on before they can help others and I wish I accepted this before I almost ran my health and my marriage to the ground by not taking care of my needs first. So the best advise I can offer is to do just like the airlines tell us to, " put your own oxygen mask on before you can help others" and ask questions and be understanding when your partner might not seem herself. And when, not if, you feel resentful of this illness that takes away a lot of life's joy for both the patient and the partner, accept that those feelings are normal and valid responses to your role and address them rather than stuff them down to avoid allowing them to fester and grow out of proportion.