Lupus and Family Support

From the WebMD Archives


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.

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.”