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Coming of Age when You have a Life-Changing Chronic Illness

When a child or teen becomes ill with ME/CFS [1], fibromyalgia [2], or tick-borne infections, they face many unique challenges in meeting typical growing-up milestones. My oldest son, now 23, has had ME/CFS since age 10 and three tick infections since age 12, so his illnesses have been an integral part of his coming of age. I have watched him struggle with things that come easy to his peers and fall behind in various ways, all while trying his best to live his life with these devastating conditions.

Coming of Age when You Have a Chronic Illness

I asked the members of our Parents’ support group [3] about the biggest challenges young people with chronic illness face as they grow and mature, and they came up with some great ideas to help overcome those challenges:

1. Prevent Isolation.

One of the biggest challenges of chronic illness at any age is staying connected [4], which is especially important during the formative years. Sick young people are often isolated from friends and spend much of their time with their parents. Some tips for staying connected with peers:

2. Keep Up with Peers.

It is painful for a sick, young person to watch his or her classmates (and younger siblings) achieve normal milestones — everything from learning to drive to having a girlfriend or boyfriend — while they feel left behind. This gets even tougher as they get older, and friends leave to live on their own, start full-time jobs, and get married. Keep these things in mind:

3. Have a Purpose

When you’re stuck at home, it’s hard to feel engaged with the world around you. But it’s possible to contribute and connect by finding creative ways of expressing unique talents that fit within illness limitations. For Example:

4. Discover Creative Ways to Earn Money

That first job is a big milestone, an important step toward adulthood plus the exhilarating freedom of earning your own money. There are ways for sick kids to start their own businesses, even from bed! For example:

Dealing with Delayed Development

There are two developmental issues that can be seriously impacted by chronic illness: emotional development that comes from interacting with others and the physical development that healthy teens experience. Both can be seriously impacted by chronic illness. Some tips to consider:

Growing up while struggling with a chronic illness is a double-whammy, but there are things that you and your kids can do to help with development and maturity. In a life that often feels out of control, taking these small steps toward adulthood can make a big difference.

This article was first published on ProHealth.com on July 30, 2018 and was updated on March 31, 2021.