TALKING TO CHILDREN ABOUT CHRONIC ILLNESS

First published in The Lupus Magazine

Although most people know me as a visual artist; my education is actually in child development. I have found over the years for this to be most helpful when I first came down with Multiple Connective Tissue Disease; or MCTD.

Although my own child was grown when I contracted this illness, as a teacher that owns an art school with children from ages 5 through ages 18, it was them I was most concerned about in the appropriateness of explaining this complicated illness. An illness that was difficult for even adults to understand and why it was physically changing who I was.

To make sure I handled this situation correctly I turned to the developmental biologist that has been respected for many generations. His name was Jean Piaget. Piaget had developed many theories on child development from the physical to the intellectual.

Children are not born as “little adults.” It was the first statement I ever read on Piaget philosophy and it is the main statement that should be considered first by anyone who has any association with them. Until approximately age 15, children are not able to posses adult reasoning.

This was not just a theory of Piaget but an observation that was backed up with the understanding of physical brain development. Children under the age of 15, and sometimes 20 for males, do not have the capacity to think like an adult because that part of their brain has not yet developed the capacity. It is with this understanding of the brain development in stages that one can make the appropriate responses to talking to children about long term illness.

Ages 4-7 The Preoperational Period...

We all know that speaking to a toddler about illness would be fruitless. But how do you talk to a child that is over the age of 4? According to Piaget, between the ages of 4-7 they are in the intuitive phase of the preoperational period. Put simply, a child between these ages has an intuitive grasp on logical concepts. They are more socially aware of their surroundings. Rules of a game are not developed; therefore simple dos and don’ts are necessary.

Yet this age also still believes in magic and is relatively unaware of the functioning of daily life. When a child, of this age, has a parent with a chronic illness they will only be somewhat aware of it. To understand just how aware; the parent needs to listen to their questions very intently. A child will only ask a question that he is developmentally able to understand the answer of. This is so important for the parent to understand as it is the building block to all discussion.

On one occasion a 6 year old asked me “Debra why are you walking that way?”…the answer I gave was, “Because my leg hurts.” I am also asked a lot by this age group, “why is your face so red?” I always answer, “Because it doesn’t like the sun.” These simple and to the point answers sufficed for them. I know this because they didn’t have any further questions. When their brain develops further, new questions will arise. Because I can have the same student for ten years; I have personally witnessed this.

Ages 7-12 Period of Concrete Operations...

Concrete Operations is in reference to the child’s development of organized logical thought. They can now understand amounts and multiple classifications of things. Because of this stage their questions will become more intricate. They may for instance ask, “What is it that your face doesn’t like about the sun?”

To which a good answer could be…

” We have two armies that travel in our blood. The first is the red army. It gives us food and nutrients. The second is the white army. It protects us from colds and infections. When the sun touches my skin, the white army that protects my skin thinks that the sun is trying to give me sunburn. So my army is confused and doesn’t know when to stop trying to heal it. It is the army that is really causing my red face.”

The “army” in my body is a good analogy to use with kids. It can explain joint pain, fatigue, and many other symptoms of lupus in a simple and understandable way. I sometimes use it when talking to adults as well.

Ages 12-up Period of Formal Operations...

Formal Operations is a phrase used to describe in the development of a child their ability to understand abstract concepts. They now understand the principles of formal logic and can perceive an action and its possible outcomes. It is the age that children will develop fears of potential situations. It is the age that your child may ask you about your Lupus and death. Because their understanding of the world around them is more concrete, the illness must now have a name. It is ok to call it by what it is. It gives them a visual to place it. Although no one wants to tell their child this illness is going to kill them it is important to be honest with them.

To solve this dilemma I suggest making them a part of the fight in little task type of ways. Say to your child, “If I do what the doctor says and take my medicine I will live a very long life.” It is at this point you can empower your child by asking them to help you in this fight. Suggest to them things they can do around the house to make it easier for you. This will not only give them a feeling of control over the situation but will also teach them empathy and make them feel like they are making a difference.

To conclude; Piaget’s theories are filled with a lot of common sense; it is backed however by scientific studies. What he gave us was peace of mind that we are doing the right thing. Remember, children will only ask what they are developmentally ready to hear the answer to. They want to be a part of the fight against this illness. They need to be reassured that you will be around for years to come.