Living well with lupus

How do I explain lupus to my child?

Explaining lupus to a child who has been diagnosed with this disease can be intimidating and difficult, depending on their age. The following are some strategies you can use when talking with your child about their lupus. You should also bring your child’s health care providers into the conversation during visits since they may be more experienced in how to talk to children about lupus.

Preschool

At this age children are 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 time, children do not need a lot of information about their disease. However, there is no need for you to hide the facts.

Some important points to make when talking to your child at the preschool age are:

  • No one knows what causes lupus.
  • Having lupus is not your fault.
  • Lupus does not happen because you misbehaved or did something wrong.

Elementary School

Children in this age group can think concretely and abstractly. Although they are beginning to realize having lupus is not their fault, it doesn’t relieve their stress. They may also expect parents to be able to “fix everything.” You should allow them to ask questions and make sure they understand what you have told them.

Some important points to make when talking to your child at the elementary school age are:

  • Lupus is not contagious. You can’t catch lupus from someone or give it to someone.
  • Lupus might make you feel very tired, sore, and/or achy. The doctor will give you medicines, and it’s important to follow the instructions about when to take them so you can feel better as soon as possible.
  • Some things will change, like being able spend a lot of time in the sun or participate in some activities.
  • Be extra careful to wash your hands and stay away from anyone who is sick, so your body doesn’t have to fight off extra germs.

Middle School

At this age your child can make rational decisions and judgments. You can begin to explain the more complicated physical effects of lupus. You can also begin to explain to your child, without becoming too technical, the names of their medications, the doses, what they are for, and how they work. 

When you think your child is ready you can ask the doctor to begin to speak directly to them.

Some important points to make to your child at the middle school age are:

  • It’s okay to ask questions about lupus or your medications, or even about personal issues.
  • It is important that you always take your medications in the right amounts and at the right times each day.
  • Try to focus on all of the things you are good at that your disease does not affect.
  • Don’t give up on your goals and dreams.

High School

As a normal part of growing up, teenagers experience a wide range of physical and emotional changes as they move toward becoming independent adults. When a crisis occurs, such as a diagnosis of lupus, some teenagers may react with expressions of anger, frustration, and/or sorrow. Others may become withdrawn. However they react, teenagers, like all of us, will deal with a lupus diagnosis in their own ways.

When serious medical conditions occur in teenagers, you and doctors must begin by making all the decisions. Once the disease is stabilized, however, teenagers need to feel that their opinion is important in the decision-making process. This helps them experience some degree of control over lupus, as well as realize the impact of their choices. The more they understand lupus, the better they will be able to manage living with a chronic illness as they move into adulthood.

This is an essential time for you to listen and be as understanding as possible. You may want to consult your teenager’s doctor about the best way to talk to your teenager about lupus. And you may find that honest and open discussion of your feelings will help your teenager to express his or her own feelings. 

Teenagers may face difficulties in taking prescribed medications correctly and regularly. Together you can design strategies that help your teenager stick with the treatment plan. Especially when your teenager is feeling well, it’s important to reinforce that inactive disease is a result of the medication and that the medication must continue for the long term. Encouraging a talk with the doctor or the doctor’s nurse may be useful.

Having a chronic illness that causes pain and fatigue can make teenagers feel left out of the life that friends and peers are leading. But even though they may not be able to take part in a favorite activity one day, it may be only a temporary setback. Helping teenagers to focus on the many things they can do, rather than what they cannot do, is a good strategy.  

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