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Children & Your Lupus

Even though you’re the one with lupus, your entire family lives with the disease. If you have children in the home, learn how to talk to them about it in a way that’s right for them.

I know my kids worry when I’m having a bad day. I always try to reassure them that Mommy really wants to go to the park and it’s lupus that’s in the way.

Don’t hide it

It’s important to find a balance between telling your kids too much (and possibly scaring them) and hiding your lupus from them. What to say and how much to share depends on your comfort level for sharing and other considerations, such as your child’s age.

2 and under

Children 2 and under won’t understand very much about lupus. They’re only focused on if you’re there for them and meeting their needs—and that can be as simple as snuggling or reading them a book when you’re not feeling well. Reassure them as much as you can.

3 to 6

With children 3 to 6, separate the illness from you. Make it clear that it’s not you who doesn’t want to play or cook dinner. Have lupus carry the “blame.” Let them know that even though your body isn’t working with you today, there will be days ahead when you’ll feel better.

7 and up

Children 7 and up can handle more information. They may want to know a little more about how your illness works and how it affects you. Plus, give them some power over your lupus. Help them come up with ways they can help you—with younger siblings or age-appropriate chores.

Be confident

It may seem scary, but you can communicate with your children during the tough times. Your honesty can help them learn valuable coping skills for a lifetime.

Get help if you need it.

  • Consult with your child’s pediatrician or a school counselor. Or look to a support group to find other parents with lupus.

Follow your child’s lead.

  • Simply answer the questions they ask, without feeling the need to add more.

Keep the lines open.

  • Opportunities to talk about lupus will pop up naturally. Always encourage your children to ask their questions and express their concerns.

Find allies.

  • Ask teachers, coaches, and other parents to tell you if they are worried about how your kids are coping with your lupus.
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Hug it out

One constant of lupus is that it’s unpredictable. And that means sometimes you may need to say to your children, “I just don’t know.” For reassurance, follow it up by sharing your hopes, your sincere love, and a hug or two.

Learn more tips for talking about lupus. 

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