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4. Ask What Your Loved One With Lupus Needs continued...

In some cases, it can be helpful to suggest specific ways you are willing to help. For example, ask if you can pick up the kids from school or get something from the store. “It can be helpful to make the offer specific and not open-ended, but make sure you ask first, rather than just doing it,” says Spector. Don’t assume that your loved one can’t do something; instead make it a genuine offer of help if needed.

“It’s really frustrating when people automatically assume I can’t do something,” says Adam Brown, 26, who was diagnosed with lupus in 2007. “I like to at least be given the option. And in many cases, I can do a lot more than what people assume.”

5. Offer a Gentle Nudge When Needed

“It’s good to have encouragement,” says Brown. “It can be helpful to hear things like ‘I know you can do this’ or ‘I think it will be helpful for you to do this.’ But you want to be careful not to nag.”

If you sense your loved one is feeling down, suggest doing something fun together. For example you can offer to pick up a movie you both love or takeout from your favorite restaurant. You may also suggest that he join a support group for people with lupus to get additional lupus support and encouragement.

6. Get Support for Yourself

Even though you’re not the one with lupus, you may also need support and encouragement. “You’ll probably experience a whole range of feelings, from fear and anxiety to frustration and anger. These reactions are all completely natural, but it’s important to find support so you have an outlet for them,” says Grusd.

Depending on your role, a support group for caretakers or for the families of those with lupus may be helpful. Some lupus support groups may also allow family members to sit in. “It can be helpful to talk about your feelings in a group situation with others who are going through the same thing,” says Borys. “It helps to know you’re not alone, and that others are experiencing the same feelings as you.”

A Body Divided:

Speaking of Lupus

Christine Miserandino Lupus advocate Christine Miserandino offers tips, advice, and coping strategies for living with lupus.
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With Lupus

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