Explaining your child's lupus to others
When you have a child with lupus, you need to learn to explain what lupus is and how it affects your child. This information is essential for everyone in your child’s life, including teachers, school officials, leaders of after-school activities, your child’s friends and their parents, peers, and other family members.
Lupus is not easy to explain. Many people have never known anyone with lupus, so they don’t know what to expect. They may think it’s contagious, or that it has something to do with cancer. Learning as much as you can, and knowing what information to share, is an important skill to have in your parenting toolbox.
These tips discuss the important information you’ll want to explain to the people who spend time with your child. The more they know, the more they’ll understand how serious lupus can be, and the better prepared they’ll be to give your child the right help and support.
Lupus is a chronic (long-term) disease that can cause inflammation (swelling) and pain in any part of the body. Lupus most commonly affects the skin, joints, and major internal organs – like the kidneys, liver, brain, heart, or lungs. It’s an autoimmune disease, meaning that the immune system attacks healthy tissue and can cause organ damage. Lupus isn’t contagious – people can’t catch lupus or give it to someone else.
People of all ages, genders, and racial and ethnic groups can develop lupus, and it affects each person differently. For some children and teens, it’s mild. For others, it’s life-threatening. Lupus tends to be more aggressive and severe in children and teens than in adults. People diagnosed in childhood also tend to have higher rates of organ damage than people diagnosed as adults.
In some children and teens, the symptoms of lupus and the side-effects of medications used to treat it will be visible, such as a skin rash or hair loss. Other children will look fine but have invisible symptoms caused by the disease, such as fatigue, headaches, or kidney problems. No matter how lupus affects a child, it takes a lot of work and team effort to manage the disease. Teachers, school counselors, activity leaders, and other people in your child’s life can be part of that team too.
Children with lupus may have to miss school and extracurricular events due to health complications and treatment needs. It’s important to explain this to your child’s teachers and activity leaders. This will help them understand why you may need to arrange for your child to make up school work, or why your child may need to limit their participation in extracurricular activities or find activities that are less physically demanding.
Both lupus and the medications used to treat it can cause agitation, confusion, mood swings, irritability, and other changes in behavior. Depression can also occur, even in children. Explaining these effects to teachers and activity leaders will help them understand why your child may behave in an odd or unusual manner, such as dozing off in class or having trouble sitting still.
Lupus can cause your child to feel extremely tired, even after a full night’s sleep. This kind of extreme fatigue can affect their daily activities, and how they learn and process information. Fatigue can also cause a flare. Talk to your child about how to recognize this kind of tiredness, and help them understand it’s important to tell an adult in charge when it happens.
Many schools now have 90-minute classes, and 90 minutes of continuous activity — especially outdoors in the sun — may be too much for a child with lupus. But children usually dislike missing fun group activities and may try to keep going even when they’re tired. That’s why it’s important to explain lupus fatigue to teachers and activity leaders. They should understand why your child may need to rest during class or activity periods.
A lupus flare is when symptoms appear or get worse. Because lupus is different for everyone, flare signs and symptoms vary. Common symptoms include hair falling out in clumps, rashes, joint pain, high fever, and fatigue. Many triggers can cause a lupus flare. The most common triggers include too much time in the sun, infections, not taking lupus medicines as prescribed, being overtired, cigarette smoke, and stress. Sometimes, though, the trigger is unknown.
Explain to adults who spend time with your child, including teachers, that they need to be alert to any sudden changes in your child’s condition. They should also encourage your child to speak up when feeling ill. If a child experiences a lupus flare, they may need to rest, skip activities, see the school nurse, or go home.
You know that lupus isn’t contagious, but the people in your child’s life may not. This common misunderstanding can do real harm to a child. For example, the parents of your child’s friends may not let your children play together, or classmates might stay away from your child in the cafeteria or on the playground.
However, children with lupus are at increased risk of infections. You’ll want to explain this increased risk to your child’s teachers, the school nurse, and other adults who spend time with your child. They should remind your child to wash their hands frequently and avoid close contact with anyone who has a cold or other contagious illness.
Most people with lupus have to take several different medicines to control their symptoms. If your child needs to take any medicines during the school day, the school nurse should supervise that process. Give the nurse a complete list of your child’s medicines, and explain their potential side effects and what to do in case of an emergency. Let teachers and activity leaders know that your child will need to visit the nurse periodically for medication.
Lupus and the medicines used to treat it can causes changes in the brain, which can affect concentration and memory. These changes can make learning difficult or nearly impossible for some children.
Explain to adults who spend time with your child how this complication affects your child’s performance in class or their ability to follow instructions. This will help them understand why you may need to arrange for assistance or services to help your child learn and stay on top of classwork.
Ultraviolet (UV) light from the sun or from indoor lights can be a lupus flare trigger. Some medicines also can cause this kind of sensitivity.
Explain to your child’s teacher, activity leaders, and other parents that this doesn’t mean your child can’t take part in recess and outdoor sports. However, you’ll want to tell them that your child should wear sun-protective clothing (long sleeves and pants, and a hat with a broad brim) when outdoors. Your child should also have time to apply sunscreen at least 20 minutes before going outdoors; should take breaks in the shade; and should avoid staying out in the sun during extracurricular activities, especially at the beach or a swimming pool.
Lupus is called an “invisible disease” because people with lupus often don’t look sick. There may be times when people ask you or your child why such a healthy-looking young person walks with a cane, doesn’t take part in a school activity, or needs a home tutor.
Be patient as you explain the invisible effects of lupus, and try not to take offense at other people’s reactions and attitudes. The more they know, the better they’ll be able to understand your child’s experience and offer support when appropriate.
Parents and medical staff should talk to children about possible changes in physical appearance that could be caused by lupus and the medicines used to treat it. Coping with the physical changes can take a toll on self-esteem — especially during adolescence, when these changes can cause a child to feel unattractive and embarrassed. Children may also feel shame and anxiety, especially if they are teased or bullied because of their appearance.
Explain these possible side effects to your child’s teachers, guidance counselor, other school personnel, activity leaders, and friends’ parents so they can look out for any signs that your child is being teased or bullied. This is especially important because children may not want to ask an adult for help due to concerns about being seen as weak or not tough, or as a tattletale or snitch.