Lupus Site - a guide for lupus patients and their families



Living with someone with lupus


If your partner or close relative has been diagnosed with lupus, you may have a number of concerns. You may see that person differently.  Maybe you were dependent on that person, but now you have to shoulder more of the burden.  If you have difficulty dealing with your loved one because of lupus, you're not alone.  Illness in a loved one often creates a lot of ambivalent feelings in yourself. Concerns about the future, your loved one's health, & money may be troublesome to you.  This is not unusual.

If you are close to someone with lupus, you have an important job on your hands. You will need to be understanding & supportive.  Remember that people with lupus don't have it easy, but they'll have a much harder time if they feel alone or isolated.

A great way for you to help is by learning about lupus & its treatment.  By understanding the illness & what it does, not only can you allay some of your own worries, but you can provide better support & understanding.

Give him/her enough space to deal with the illness & to regain some control over his/her own life.  

It might help for you to go along when he/she visits the doctor, not only for support, but also to listen to what the doctor says, as it is often hard for the patient to take everything in at once & remember things the doctor said.

Encourage him/her to look after him/herself properly, & take medications, but know when to back off.  Offer help with everyday household chores to give him/her a rest, & reduce the pressures on him/her. When he/she is feeling well enough allow him/her to carry on as normal, don't smother them with pity, but do offer sympathy.

Most importantly keep talking, talk about your fears & problems as well as his/hers. If you don't communicate then you won't be able to offer him/her the best help he/she needs.




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