While I certainly don't have all of the answers, and I can only speak from experience, here are three thoughts on the subject of helping someone with lupus. Lupites - feel free to chime in. I welcome the input.
1) Realize it's a process: Learning to deal with lupus doesn't always come easily (come to think of it, does it ever?), and it doesn't happen overnight, so depending on where your loved one is in the process, you may need to adjust your level of help, intervention, assistance, etc. It may change week to week, or even day to day (just like the disease itself), so just take the cue from your lupite. For instance, if they want to talk, be ready to listen. If they don't want to talk, don't push. They'll come around when they're ready (and feeling better!)
2) Believe they have the power to do the right thing: I can't tell you how much it helps when someone says to me, "I know you're doing everything you can to control (beat, deal with) your lupus," rather than, "You shouldn't be doing *blank*." It gets me hot under the collar just thinking about it! Try your best to instill confidence in the person you're trying to help - if you believe they can make the changes necessary to live well with their disease - it will allow them to believe they have the power to do so, too! Here's one of my favorite quotes - taken from a book by Dr. Gordon Livingston, "And Never Stop Dancing" - included in my book:
"To assume that people have within themselves the capacity to decide what is best for them is a vote of confidence."
3) Help them focus on the now: There were plenty of times during my worst flares when the pain was so excruciating -I didn't know how I was going to make it through the next hour. In fact, I can think of a half-dozen times when I had my doubts about getting from one minute to the next. These were some of my most desperate times, and I can tell you that my husband, my sister, and my brother-in-law, in particular, were paramount in helping me focus on the here and now, and not one minute more. Whether it's getting through the present flare, holding out until the next doctor's appointment, or counting down the minutes until they can take their next dose of medicine - helping your favorite lupite get through those last few unbearable weeks, days, or moments will make you a hero!