My business partner has sjogrens & lupus and I would like advise on how to best support her. While I have read about the disease, and thought I understood ... it has become clear that I do not fully appreciate her pain ... and I am not quite sure how to best support her going forward. I think the world of her and would really appreciate your ideas and advise.
its really nice you want to be supportive. i have lupus and i have a really good friend who genuinely cares. she wants to know everything, exactly what i am going through. although it is hard to describe it feels good to have a friend who really cares enough to listen. a friend who doesnt judge me on how i look (alot of people with lupus, you would never know they have it just by looking at them, even though they feel miserable)
one hour of the day i can be feeling ok and the next out of nowhere i can be hurting and so fatiqued.
i hope this helps you and your friend a little.
you sound like a really good friend to have.
I've been living with Lupus for almost 20 years(I'm 40 now). The first couple of years were very difficult & depressing but my family was very supportive & understanding. You can be supportive to your friend by trying to understand any mood changes. When I'm having a bad day/a lot of pain, I tend to get quiet & don't want to talk about it. I try to focus my energy on what I need to get done at work or home. My husband & son are very understanding & don't take it persoanlly if I don't want to talk or be cheerful.
Yes, she is lucky you care! I would add to never stop asking her to do things with you -- if that is what you've done in the past. She may have to say no a lot more than yes, but never stop asking! It gets depressing when you realize that no one ever asks you to go anywhere anymore! Also, if you see she is fine during the day and then suddenly isn't, do what you can to help her with her load, if possible. But don't take over for her! Sometimes just having a rest can help us keep going! So, ask her if she'd like to go sit and rest and have a drink for a while, she'll likely come back feeling better! I am assuming that maybe you have a store together and must wait on people... try to be understanding about the unpredictibleness of this disease, but don't feel put upon either! She would not want it to get to that! IMHO If she is obviously too sick to be working maybe consider hiring someone temp to help out til she feels better? Just for a few days at a time? Most of all, ASK her what she needs? I agree with the above post about not wanting to talk alot when I feel bad... she is lucky to have you!!! Good luck adn God bless!