3. Accept Changes Due to Lupus
When someone has lupus, they often have to make major changes in their lives. They may not be able to do the activities and tasks they were used to doing. Depending on your relationship, these tasks may shift to you.
“The roles in your relationship may change and you need to be prepared for this,” says Borys. “If your partner usually takes care of all the household chores or the children or earns the income for the family, it’s possible these responsibilities may shift to you.”
Change can be difficult, especially when it affects your personal relationships. But accepting the changes that lupus brings can help you move forward.
“I tell patients and their loved ones that you need to let go of what was, and what could have been in order to enjoy what is and what still can be,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and Assistant Professor of Medicine and Behavioral Medicine at Rush University. “Once you accept this, it often makes living with lupus a lot easier to handle.
4. Ask What Your Loved One With Lupus Needs
If you’d like to help your loved one in some way, but aren’t sure what she needs, just ask. “It may sound simple, but many people assume they know what the other person needs, so they don’t even bother to ask,” says Spector. “There can be a lot of variation with lupus, so what someone needs help with on one day may be very different than what they need on another day. The only way you will know for certain is to ask.”
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.