If someone you love has lupus, you probably are affected by the illness too. Whether it’s your spouse, parent, child, or close friend who has lupus, chances are that lupus touches your relationship in some way.
It can be hard to know how to deal with a chronic illness like lupus. In many cases, you may not understand the symptoms. Your loved one may seem fine one day and then be unable to get out of bed the next. In some cases, lupus can force changes in your established role. This can cause a strain within the family and in other personal relationships.
But it’s important to remember: Lupus is also frustrating for the person who has it. This article offers seven tips on what to understand about lupus and how you can help support your loved one with lupus.
1. Talk Openly About Lupus and Its Impact
“Honest, open communication is the best tool you have in keeping your relationship strong,” says Ann Rosen Spector, PhD, a clinical psychologist in Philadelphia and adjunct professor of psychology at Rutgers University. “But when someone has a chronic illness, people often don’t talk about it. They can be afraid of saying the wrong thing or hurting the other person’s feelings.”
Avoiding discussions about the lupus or your feelings can backfire. It’s important for you to be able to share how you feel. And it’s also important for the person with lupus to communicate honestly about how she is feeling and what she needs.
“Sharing feelings isn’t always easy, especially if you’re feeling hurt or angry,” says Debra Borys, PhD, a psychologist in private practice in Los Angeles. “But it’s important to know that any emotional reaction you’re having to the illness -- whether it’s fear, frustration, or anger -- is perfectly normal. Try to find ways to share these feelings openly with your loved one, and allow her to share too.”
If you need help starting a conversation or talking about difficult feelings, a family therapist may be able to help. “A family therapist can make sure everyone is heard and help foster compassion and honesty in the relationship,” says Spector.
2. Understand Lupus the Illness
Learn all you can about lupus and its symptoms. This will help you better understand what your loved one is going through. “Lupus can be a very difficult disease for others to comprehend because the symptoms can vary so much. But the more you know about lupus, the more empathy you can have for your partner,” says Helen Grusd, PhD, a clinical psychologist in Los Angeles and past president of the Los Angeles County Psychological Association.
Ask your loved one’s doctor to recommend reading material for you. Or ask about reliable sources online. You might offer to accompany your loved one on trips to the doctor.