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My Girlfriend of 18 has Mild Lupus, and i just read in the other thread about sue i am so sorry that was so harsh what he did. Anyway i know she hurts sometimes and hides it from me and im on this site to get as much info as possible.

I was just wondering if there were any tips you all could give me in how to help her when she is in pain. i always feel so hopeless. :worried:

Thanks
Love
 

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Hello Jonesy
First of all the fact that you are investigating Lupus is a huge support for your girlfriend - tell her about it. I did some research which i was first diagnosed and gave it to my friends, we discussed it and now when i am in pain they ask me what i want - the answer is usually leave me alone, carry on as normal, take me to doctor or just a hug and a shoulder. As unfortunately that is all they can do. Maybe it might be worth asking your girlfriend what it is she would like when she is in pain.
I would advise patience though - it is very difficult to be rational when in pain, it is also very frustrating when in pain and different people cope different ways....
I wish the both of ye the best of luck and i am so happy your girlfriend has you for support.
Elaine
 

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Hi Jonesy,

Your girlfriend is very young. Her life has been turned upside down. Most likely she feels defective. She needs help working through this, but you can not push. Loved ones can help the most just by being supportive. It is the small things that pick up the spirits the most. A soft hug, a flower, a new joke, or offering to do a chore all show you care.

When I am in pain I tend to get quiet and want to be on my own. Left on my own I can drift off to sleep, cry or do relaxation breathing. When someone else is around I feel I have to put on a happier face and keep up my part of any conversation. All that is just more exhausting.

Never wanting to be a burden I try not to overload my loved ones with the disease. Believe me hearing complaints or constantly being asked for help wears thin quickly. Coming to the site gives me the outlet to let out my feelings and frustrations. Directing her to the site might be helpful for her.

I commend you for trying to learn more. Your girlfriend is fortunate to have someone that is so caring.

Take care,
Lazylegs
 

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Hello there :)

It is clear that you obviously care a lot about your girlfriend :). Just taking the step of coming here and learning shows that.

Mainly someone with lupus needs what anyone in any relationship needs - love, trust and understanding.

As lazylegs said people with lupus will often try and hide how bad they are feeling or they will withdraw and be quite silent at times. Often we feel guilty about spoiling other people's fun and often we need to withdraw and just look after ourselves. I find other people's demands nearly impossible to deal with when I'm feeling bad.

If your girlfriend knows that you are there, without you being pushy and in her face, that will mean a lot. Doing practical things for her spontaneously and naturally as if that were totally normal can also help a lot. For example when I am feeling bad my husband can see that immediately and he will automatically do the things that need to be done in the house and also send the kids off on some activity so that I can be alone and just rest. No-one else would even notice he's doing it. He certainly dosn't make an issue of it.

Another thing that is very important to me is still being able to feel that I am truly part of everything and having a laugh. I don't want to be treated as an invalid or be defined through my illness. When I'm not feeling up to going out I appreciate being able to stay in but not necessarily being cut off from the world. Instead of going out to a dance or an evening, friends often come round for a more relaxed evening at home.

Lastly those soft hugs and marks of attention that lazylegs and elaine mentioned are very important.

Katharine
 

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Hello Jonesy,
Good to have you here.
Can I just point out that the term "mild" Luus just means no organ involvement.
Even mild lupus is very unpleasant. Adjusting to a diagnosis is hard. I wish you both all the best, and you are both very welcome here.
x Lola
 
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