How to Help Your Child Navigate an Invisible Condition

Invisible illnesses are hard enough to handle as an adult, but what do you do when your child is the one affected?

Both my children, Maya and Christian, are of average height, average weight, and average intelligence. They act like any other 7-year-old and 3-year-old. Maya likes to play with her dolls and watch YouTube videos, while Christian likes to play with his trucks and watch “Paw Patrol.” Both Maya and Christian have the same social abilities as their peers; you would never know from watching them at the playground that on the inside their little bodies are fighting for their lives.

Maya and Christian both have propionic acidemia (PA). While they are smiley and happy on the outside, inside their bodies are raging war. Propionic acidemia is a metabolic disorder in which the body is unable to process certain parts of proteins properly. This organic acid disorder leads to abnormal buildup of particular acids, which can then become toxic and cause serious health problems including damage to the brain and nervous system.

As a parent of two children with an invisible illness, I have discovered a few ways to help my children with their diagnosis.

Teach them to advocate for themselves. As scary as it sounds to me, eventually they’ll be on their own in this big, wild world. They need to understand how to take care of themselves, speak up for themselves, and handle any questions. Teaching them to advocate for themselves doesn’t happen overnight – but by being an advocate myself and modeling behaviors for them, they slowly become better and better at advocating for themselves.

Educate them on their condition. Maya and Christian are both well aware of their condition. While I only share information with them that is age-appropriate, I believe knowing about their PA helps keep them safe, healthy, and happy. Educating them involves teaching proper medical terms as well as simpler explanations to be sure they understand.

Give them the opportunity to speak about their condition. When other people see us counting proteins on food labels, turning away items that cannot be eaten, or discussing our latest doctor’s appointment or hospital stay, they usually ask, “What’s wrong with them?” Before giving an explanation myself, I first ask Maya if she wants to explain her PA to the person. If she is not comfortable sharing, I’ll do it. But I always give her an opportunity first so she can continue to learn about her condition, advocate for herself, and educate others.

It is my hope that by teaching my children to advocate for themselves, educating them, and allowing them to speak about their condition, they’ll be healthy, happy, and safe when it’s time for them to be on their own.

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Thinkstock photo by ulkas