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

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When a child or teen becomes ill with ME/CFS, fibromyalgia, 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 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, 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:

  • Connect online. There are many support groups that can be found online for young people suffering with similar illnesses to find friends who understand. Social media is also a great place to look for others who share similar interests. Connections can also be made by playing your favorite games online.
  • Socialize at school. By law, schools must provide an equivalent education in the “least restrictive environment.” Use an educational advocate to help your young person get what they need: home education plus as much time with peers as is physically possible. One teen could only manage to go to school for lunch and art class, so her accommodations plan allowed that. My son took some classes at home and went to others in person when he was able to.
  • Staying in touch with old friends. Young people can keep in touch through text, message, or talking on the phone. My son had spent many days on the couch Snapchatting with friends! Consider making a standing date with close friends. One girl had to switch schools, but her best friend still came to spend time with her every Friday. We hosted movie nights for my son and his friends — low-key but lots of laughs.
  • Siblings and cousins count, too! Connecting with siblings, cousins, and other family members can help. Don’t limit cousin time just to holidays — our sons have ongoing group chats with their cousins year-round.

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:

  • Take time to grieve. It’s important for young adults to know that it’s OK for them to grieve for what they’re missing. You can support this by making sure you acknowledge these kinds of feelings rather than dismiss them.
  • Find a new way to meet milestones. With the right adaptations, many milestones can be reached through alternative routes. Maybe your son or daughter will need lots of 15-minute sessions in the car with mom or dad instead of driver’s ed. There are lots of options for keeping up in school, including part-time or full-time homebound instruction and online classes. You can also ask the school to waive all but the most necessary graduation requirements. Even homebound kids can learn how to pay bills online, write checks, and other adult skills.

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:

  • Taking care of a pet. Having a pet accomplishes several goals, including caring for someone else, having a purpose, and learning life skills. One girl got a puppy and is helping her parents train him as a service animal.
  • Expressing yourself artistically. It is still possible to focus on developing talents, for instance in music, art, or graphic design. Some chronically ill young people post their creations online or even sell them.
  • Finding an online audience. One girl started her own YouTube channel at age 12 and has grown it to over 80 thousand subscribers. It can be as simple as sharing your own interests in make-up, video games, fashion, or other hobbies and finding your audience through social media.

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:

  • Working as mom or dad’s assistant. Teach your young person how to order supplements online, refill medications, pay bills, and do online research and then pay him or her to do some of these tasks. This could lead to a real job as an electronic or virtual assistant, a hot new field.
  • Turning creative hobbies into cash. There are many online markets where a young person can sell their creations, like eBay, Etsy, and other websites. An online search for “turn art into products” brings up loads of ways to make money from personal creations.
  • Starting a small business. The opportunities to make money from home are endless. You can sell products or services, create online courses, and more. Check out the podcast, website, and book Side Hustle School for hundreds of ideas and tips to get started.
  • Applying for disability. Young people who are disabled and unable to earn their own money can apply for disability. One mom said, “It’s not a lot (of money), but giving her some financial independence has been really positive. In a world where she has so little control…this is a bit.”

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:

  • Socialize as much as possible. See the tips above. Both online and face-to-face socializing will help with emotional development.
  • Recognize delayed development with patience. Try not to get annoyed when your normally compliant 20-something begins to argue and rebel — these are good signs! They were probably too sick as a teen to go through the normal rebellious phase, so it’s coming later.
  • Get the right medical support. These illnesses are known to cause endocrine (i.e. hormone) dysfunction, which sometimes affects development, including moods, growth, and libido. See an endocrinologist to check for primary endocrine disorders that can be treated, like thyroid dysfunction or low growth hormone. Also watch for signs of self-hatred or body dysmorphia — not unusual when you feel like your body is betraying you — that would indicate the need for professional counseling.

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.

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By sljackson

Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college, also dealing with three tick infections. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) and Book By Book. You can follow Sue on Twitter at @livewithmecfs.

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