Parenting a Child With Lupus
You likely have helped your child through tummy aches and scraped knees. But parenting a child with a chronic illness is different—and your child needs special support.
Watching my baby girl suffer and worrying that she might miss out on being a kid is devastating. She may be only 10, but she’s our family hero.
When your child’s been diagnosed with lupus, you may be feeling fear, uncertainty, and worry. Remember that your child’s doctor should be the first place you turn with any questions or concerns.
Open up about lupus
Your child may have already been living with lupus for a while. But as they get older, how you talk about lupus and the questions your child may have will change. Make sure what you say is appropriate for your child’s age and maturity level.
No matter their age, all children living with lupus should know it’s not their fault they have lupus. Nothing they did or didn’t do caused it.
Make sure your child also understands:
- Lupus is not contagious. It can’t be given to someone else.
- Lupus might make them feel tired, sore, and achy. Have them listen to their body and tell you and/or their doctor anytime they’re not feeling well.
- You and your child can help their teachers, coaches, classmates, and friends understand about their lupus.
- It's up to you and your child whether you both want to tell their friends that they have lupus. Friends who know may better understand if your child has to skip activities.
- There will be times when your child feels okay and times when lupus makes them feel sick. Those sick times are called “flares.”
- You’ll work with your child and their doctors to learn ways to better manage their lupus and keep them as healthy as possible.
Get help from professionals
Coping with a chronic illness can be tough at any age. Children especially may not be able to find the words to express how they’re feeling. Helping them understand their emotions can be a big part of your job as a parent. You may want to ask your child’s doctors for advice.
Watch for any signs of anxiety or depression. It often looks different in children and teens than in adults. Look for irritability and/or anger, continuing sadness, or a loss of interest in activities they once enjoyed. If you see any of these, tell your child’s doctor right away.
School smarts
The unpredictability of lupus can be a special problem when it comes to your child and their schoolwork. Consider working with your child’s school to make a plan to help ease the stress your child and their teachers may be feeling.
- Ask your child’s doctor for help and guidance in working with teachers and administrators.
- Make the first move. Set up time with school staff to set the groundwork before a flare causes your child to miss school.
- Teach them about lupus. For example, you can share the Basics of Lupus from this site with school administrators and staff to help them get to know the disease better.
- Be open about your child’s lupus and how it affects them day to day.
- Acknowledge that the school has needs and challenges, too.
- Research any formal plans, such as a 504 or Individualized Education Plan, you may want to put into place.
Take care of yourself, too
Being a caregiver, no matter the age of your loved one with lupus, can be stressful. Acknowledge that—and then make sure to try to find time to care for yourself.
If the going gets really tough, consider reaching out to a professional, such as a counselor. After all, you must take care of yourself in order to help your child.
Focus on the family
There’s no denying that a chronic illness brings changes for the entire family. But you can all work together to create a new normal that’s healthy for everyone. Start by keeping the lines of communication open.
Try to maintain as many normal family activities as you can. Family dinners and game nights don’t have to stop with a lupus diagnosis, even if sometimes they have to be interrupted or delayed.
Still have fun together. Choose activities in locations that work for all of you. Think about places to avoid, such as any place too sunny or activities that may be too strenuous, depending on what your loved one can do. A visit to an arcade, baking cookies at home, a trip to the library, or painting pottery are some ways to enjoy each other without focusing on lupus.
Learn more ideas for caregivers.
Caregiver Stress & Self-Care
Communicating About Lupus
Parenting a Child With Lupus
