Communicating About Lupus

Ever since your loved one heard the word “lupus,” you’ve probably had a lot of feelings about this diagnosis. You may have felt fear, anger, grief, or sadness, among other emotions. Should you share these feelings with the person you care about? Experts say yes, because open communication can keep your relationship healthy.

It’s not clear what she wants from me. One minute she wants me to be comforting, and the next she wants me to go away.

Starting the conversation

Communicating your feelings may seem easier said than done. Since your loved one may be suffering, is it really okay to talk about what it’s like for you? While it may be impossible to know what it feels like to have lupus, if your loved one has this condition, you’re living with it, too.

Find a quiet time to talk, when your loved one is feeling up to it, and try one of the conversation starters below. Notice that all these openers begin with “I” statements to avoid making your loved one feel like you’re criticizing them.

“I think we should try to talk about how we’re both doing. I have a lot of feelings about your lupus, and I’m sure you do, too.”
“I know all this must be incredibly hard for you. Can we talk about how you’re feeling—and how I am, too?”
“I’d like to share my feelings about lupus, but I don’t want you to think I have these feelings about you.”

Scheduling talks

Regularly set aside time to discuss lupus and other difficult topics. For example, plan for a check-in each Tuesday night or on your Saturday morning walk. Knowing that your thoughts and feelings will have a chance to be discussed can help reduce tension throughout the week.

Remember, though, that lupus has a way of changing plans. If your loved one isn’t up for talking at your regular time, that’s OK. Reassure them that you understand and save it for as soon as they’re feeling better.

Dealing with brain fog takes a lot of patience and understanding, too. It can be frustrating for you—and just imagine how tough it is for your loved one. If brain fog is getting in the way of your communication, encourage them to write down thoughts and feelings as they have them to share with you later.

Laying the groundwork

Words aren’t the only way to communicate, of course. Show your support by:

Taking the time to really learn about lupus
Going along to doctor visits and other appointments
Setting up places at home for rest and quiet
Scheduling outdoor activities while being mindful of sun protection
Helping with chores and errands

All these actions communicate love and care, and they may help to make your conversations that much more constructive.

Communicating About Lupus

Starting the conversation

Learn more ideas for caregivers.