Talking to Kids About Lupus: A Parent’s Guide to Honest, Age-Appropriate Conversations

Explaining lupus to kids can be a tricky situation. Lupus affects the entire human body quickly, which can be confusing for kids. Why does a person fighting lupus feel energized and weak at the same time? Why is there a lot of medicine on the table? What kids often see will slowly be turned into questions. This article explains the importance of addressing your lupus diagnosis with your child and provides suggestions for talking to kids about lupus.

*Disclaimer:

The information provided in this article is for general informational purposes only and is not intended as medical advice. It should not be used as a substitute for professional diagnosis, treatment, or advice from a qualified healthcare provider. Reliance on any information provided in this article is solely at your own risk.

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When someone in the family is diagnosed with lupus, the news can be scary, just like a blackout. The whole family experiences the scare, including your children. Children often see their parents as invincible. When they’re scared, they’ll turn to you, their superhero, hoping you'll come and shed some light in the darkness.

But why do kids need an explanation for your lupus diagnosis? Children are observant human beings. Whether adults notice or not, children often notice changes in your behavior and are affected by them.

Moreover, explaining your illness to your children builds trust, which is very beneficial for child development:

• Building a secure attachment: When children trust someone, they form emotional bonds that foster confidence.

• Strong emotional regulation: When trust is established, kids feel safer to express themselves. This emotional safety helps them regulate their feelings and handle difficult news with calm and understanding.

• Promoting a healthy relationship: Children who were taught to trust adults are more likely to be able to share that trust among their peers. This will promote healthy relationships.

Trust is your flashlight. Without trust and your willingness to tell them what is going on, you’re leaving them scared in the dark. That is why honest conversations are important for children. Below are a few tips that parents can follow when telling their kids about a lupus diagnosis.

Different ages require different kinds of explanations. Below are pointers parents can use to talk to children about lupus while keeping things age-appropriate.

Toddlers and Pre-K (2 - 5 years old): Children this age are able to sense when someone is sick or feeling tired. At this stage, parents should keep it simple. If it helps, use storytelling with their toys to explain the situation.

Young Children (6 - 8 years old): At this stage, when it comes to explaining something, children need clear and short explanations. Sometimes, they also need emotional support and reassurance. Parents can start explaining lupus with simple details and comparisons. They may start blaming themselves for changes in your behavior. For example, when you are tired and resting, children may think it's their fault for making them tired. As a result, make sure to give them emotional reassurance.

Tweens (9 - 12 years old): Tweens are the age group with a more complex understanding of things, but not quite the same emotional maturity as teens. Parents can give more context about lupus, like what lupus is and what it attacks. Be honest with them that lupus does not have a cure, but also be hopeful that it will heal. Parents may start introducing them to unpredictability, such as how lupus fighters may experience flares, as well as simple things they can do to help.

Teens (13 - 18 years old): Teens are at the age where they can understand the complexity of a problem, whether physically or emotionally. Often, they can handle honest and bitter truths. So parents, no need to sugarcoat too much with teens. Use accurate terms and explain what it is medically. Be open and involve them in ways they can help.

Differentiating ages by emotional maturity is the easiest way for parents to introduce kids to lupus.

Lupus patients have their ups and downs. A period of worsening symptoms is known as a flare-up or a flare. As normal as this is, it may confuse your kids. They may ask questions why, on some days, you can play with them when on other days you can barely get out of bed.

Parents and kids can make emergency comfort bags. This way, when a flare happens, both parents and kids know what to do and how to calm themselves. Encourage your kids to fill their bag with anything that might help them overcome anxiety, worry, loneliness, or boredom, like coloring books, pencils and crayons, and toys. Parents can also build their bags by putting things that they might need, such as stress-relieving items (massage gun for swelling, hot pack for pain, cream to massage aching areas).

It’s important to think of your child as someone going through the process of growing up. They are developing skills, mental and physical changes, and expression and feelings. Asking them to help you with tasks or chores without burdening them is a good way to explain how lupus affects everyday life.

A good way to ask for help is by saying, “Would you like to help me do A? Lupus has made it hard for me to do A.” or “Can you remind me to …? This will help me avoid flare-ups.” Simple tasks like reminding you to take medications, bringing you a glass of water, or cleaning the dishes so you don’t have to can lift some weight off your shoulders and help your child better understand lupus.

Talking to children about an illness doesn’t always require heavy one-time conversations. Especially with younger kids, small explanations with different methods can make them understand more and have a deeper impact. Whether it is through games, snacks, care packages, stories, or simply being present, your honesty helps them feel safe, trust you, and feel seen and included.

Being diagnosed with a disease like lupus is hard for both you and the people who care about you. In the end, it’s not just about explaining lupus—it’s also about caring for each other and braving through these difficult moments together.

Child Development: Ages and Stages | Children's Hospital of Orange County

Parenting With Lupus | WebMD