Sunday, September 23, 2018

Weekly Inspiration: Coming of Age with Chronic Illness

Back in July, my article, Coming of Age with Chronic Illness, was published on the ProHealth website (at the link). I have reprinted its text in full below.

The article was based in part on our own experiences. Our sons both became ill with ME/CFS in late summer 2004, at ages 6 and 10. The younger one had milder ME/CFS for about 10 years and then recovered completely at 16. Our older son also got Lyme disease plus two other tick infections - which went undiagnosed for over 3 years - at age 12, so his journey has been more difficult. He is now 24 years old and just graduated from college. So, both of our sons came of age with chronic illness, though the younger one was far less affected by it.

I also reached out to an amazing community to get input for the article - our Facebook group, Parents of Kids/Teens/Young Adults with ME/CFS and Related Illnesses. They came up with some wonderful advice and tips that I incorporated into the article - I wish I had though of some of this stuff 10 years ago!

So, if you have kids who are chronically ill, this article is a must-read, with practical advice for helping them to mature and develop, even if they can't leave the house. And if you do have sick kids, you are welcome to join our support group mentioned above. It is solely for parents of sick kids (I use the term "kids" loosely - some of our members' kids are now adults but still dependent or semi-dependent). Just click the Join button for our group and then answer the questions that pop up so we can add you quickly. In the meantime, here's the article:

Coming of Age with Chronic Illness

When a child or teen becomes ill with ME/CFS, fibromyalgia, or tick infections, he or she faces 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.

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:

One of the biggest challenges of chronic illness at any age, staying connected 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:
·      Find friends online. Join groups for young people suffering with similar illnesses. Look for others on social media who share your interests. Play your favorite games online.
·      Attend school as much as possible. By law, schools must provide an equivalent education in the “least restrictive environment.” Use an educational advocate to help your young person get what he or she needs: 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.
·      Stay in touch with old friends. Young people can text, message, or talk to friends. My son has spent many days on the couch Snapchatting with friends! Make 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.

Keeping 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.
·      Take time to grieve. Let your young adults grieve for what they are missing. Acknowledge their feelings rather than dismissing them.
·      Work on meeting milestones in their own way. Maybe your son 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, plus having the school waive all but the most necessary graduation requirements. Even homebound kids can learn how to pay bills online, write checks, and other adult skills.

Having a Purpose
When you are stuck at home, it is hard to feel engaged with the world around you. Try to focus on something outside yourself and find your own unique talents that fit within your limitations. Here are some ideas from other sick young people:
·      Get 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.
·      Express yourself artistically. Sick kids can focus on developing talents and expressing themselves, with music, art, or graphic design. Some chronically ill young people post their creations online or even sell them.
·      Find an online audience. One girl started her own YouTube channel at age 12 and has grown it to over 80 thousand subscribers. Take advantage of your own interests in make-up, video games, fashion, or other hobbies and find your audience through social media.

Earning Your Own 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!
·      Work 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 Assistant, a hot new field.
·      Turn creative hobbies into cash. Help find markets online for your young person's creations, through eBay, Etsy, and other websites. Search for "turn art into products" for loads of ways to make money from personal creations.
·      Start 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.
·      Apply 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."

Delayed Development
Two developmental issues to consider: 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.
·      Be patient and recognize delayed development. Try not to get annoyed when your normally compliant 20-something begins to argue and rebel – these are good signs! He or she was probably too sick as a teen to go through the normal rebellious phase, so it's coming later.
·      See a doctor. 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.


Tanya @ Moms Small Victories said...

This is a very thoughtful and well written article. It must be so hard for teens or kids to have to deal with chronic illness, growing up is hard enough. Your boys are lucky to have you in their corner for their physical and emotional health needs.

Alison Hayes said...

Sue, thank you for this insightful post! My younger sister had a TBI when she was 16 and lost her junior and senior years of high school. Being able to recognize and grieve over the loss is huge too, because the loss is very real!
thank you again for this food for thought!

Sue Jackson said...

Aw, thanks, Tanya! It is very challenging for a young person - particularly being different from their peers and unable to do what everyone else is doing. It didn't affect my youngest as much since his illness was milder and well-controlled with medication (plus he was fully recovered by 16), but it's been very challenging for my oldest and continues to be.

Sue Jackson said...

So sorry to hear your sister went through that, Alison - great that you recognize the importance of grieving! Too often we try to talk our kids out of their feelings because it makes us feel uncomfortable.