Tips for teaching children and teens about their lupus

There are many different ways to teach newly diagnosed children and teens about lupus. Whatever way you choose, make sure what you say is appropriate for your child’s age and maturity level. You may also want to ask your child’s doctors for advice — they have lots of experience talking to children and can help you teach your child how to manage symptoms and cope with having a chronic illness. 

All children and teenagers with lupus, no matter their age, should know these basic facts:

• It’s not your fault you have lupus. Nothing you did or didn’t do caused it.
• Lupus is not contagious — you can’t catch lupus or give it to someone.
• Lupus is not cancer, even though you might have to take medicine that’s also used for cancer. 
• There will be times when lupus makes you feel sick and times when you feel okay. Your doctors and parents want you to learn how to manage lupus so you stay as healthy as possible. 

Preschool: 3 to 5 years

Children between the ages of 3 and 5 tend to be very literal. They may think, “I’m sick because I was being bad” or “I’ll be really good and I’ll get better.” At this age, your child doesn’t need a lot of information about lupus. But you will want to tell them the basic facts in language they can understand.

Use these talking points with your preschool-aged child:

• Having lupus doesn’t mean that you’re bad or did something wrong.
• Lupus can make you feel tired. It can also make different parts of your body hurt.
• The doctor gives you medicines to help you feel better.
• It’s important to take your medicine on time every day.
• If you feel sick in any way, tell your parents, teacher, or another adult right away. 

Elementary School: 5 to 10 years

Children in elementary school think both concretely and abstractly. Children may be able to understand that having lupus isn’t their fault, but that doesn’t relieve their stress. Encourage your child to ask questions about lupus and about having an illness. Make sure your child understands what you’re saying.

Use these talking points with your elementary school-aged child:

• Having lupus isn’t your fault — you didn’t develop lupus because you misbehaved or did something wrong.
• You’ll still be able to go to school, play with your friends, and do your homework and chores.
• Lupus might make you feel tired, sore, and achy. It’s important to pay attention to how you’re feeling. If you’re not feeling well, tell your parents, teacher, coach, or another adult.
• Your doctor will give you medicines. It’s very important to take them when you’re supposed to.
• I will make sure your teacher understands about your lupus. 
• It’s OK to tell your classmates you have lupus. That way they’ll understand if you sometimes have to stay home or skip activities.
• You can ask your friends if you need help with something. But always tell your teacher or another adult if you’re tired, need to take a break, or feel sick.
• Make sure you wash your hands a lot during the day, and try to stay away from classmates who are sick so you can avoid germs.  

Middle School: 11 to 13 years

Middle-school aged children can make rational decisions and judgments. You can start to teach your child more about how lupus affects the body. You can also start to explain the medicines your child takes — the doses, what each one is for, and how it works.  When you think your child is ready, you can ask their doctor to start to speak directly to them at appointments.

Children at this age may be able to communicate about how they’re feeling, but they may try to deny or hide aspects of their disease. You may want to ask a counselor or mental health professional to help your child work through difficult feelings while learning to accept and adjust to having lupus.

Use these talking points with your middle school-aged child:

• You have lupus because of a problem in your immune system. The immune system is the part of the body that fights off germs (bacteria and viruses) to keep you healthy.
• Having lupus isn’t your fault. You didn’t do anything to cause your lupus.
• Sometimes lupus will make you feel tired, sore, and achy. It’s important to pay attention to how you’re feeling.
• If you are not feeling well, tell your parents, teacher, coach, or other adult.
• It’s OK to ask questions about lupus, your medications, or even about personal issues. You can ask me, your doctor, or the school nurse.
• Some of the medicines you take may change how you look or feel. But it’s important that you always take them in the right amounts and at the right times every day so you can stay well.
• At school, it’s OK to speak up and ask for a break or ask to see the nurse.
• You may feel different because of your lupus. But you are more than your diagnosis – remember that lupus doesn’t define you.

High School: 14 to 18 years

During high school, teenagers go through a wide range of physical and emotional changes. When a teen is diagnosed with lupus, they may react with anger, frustration, or grief, or they may become quiet and withdrawn. Every teen will cope with their diagnosis in their own way. It’s important for parents to listen and be as understanding as possible at this challenging time. 

Since teenagers can understand the more technical aspects of lupus, you’ll want to explain the medicines they take, why each one has been prescribed, and what side effects to watch for. Now is also the time to start to teach your teenager how to take charge of their health and to work together to come up with coping strategies.  Talk to your teen about seeing their doctor by themselves so they can learn how to manage their care.

Use these talking points with your high school-aged child:

• Lupus is a chronic (long-term) illness with periods of feeling well and periods of feeling ill. (When your symptoms appear or get worse, it’s called a “flare.”) Even though there’s no cure yet, there’s a lot you can do to manage symptoms. Learning as much as you can is one important way to do that.
• Sticking to your treatment plan will help you feel better. Taking your medicines as directed, eating nutritious foods, exercising, minimizing stress, and having a positive outlook will help prevent flares so you can do the things you enjoy. 
• Three tips for staying on top of lupus: Get lots of sleep, use sun-protective clothing and sunscreen every day, and avoid flare triggers.
• Lupus can cause pain and make you feel tired. Other things in life may make you tired, too. Listen to your body, and take breaks when you need to.
• You may need to adjust your daily routine and do some things differently to help manage your symptoms.
• The side effects of lupus medicines can change the way you look and feel.  But that doesn’t change who you are.
• Your friends may be disappointed that you can’t hang out with them when you’re not feeling well. Remind them that it’s just temporary. Think about inviting them to hang out at your house when you’re feeling better.
• You have options and control of some things, so if you want to make changes to your medical treatment, talk with your parents and your doctor.
• If you have limitations because of your lupus, don’t let them keep you from reaching for your goals and dreams. There are still many things you can do and accomplish. Be creative and resourceful, use your support system, and do things your own way. Remember that lupus doesn’t change who you are.
• Some pediatric rheumatology clinics and centers need volunteers for lupus research studies. If you think you’d like to take part, talk to your doctor. You might find that helping other teens with lupus makes you feel empowered.