Saturday, September 29, 2012

Strategies and Resources for Teens with Chronic Conditions


I was prompted to write this post after reading an article about a Mom’s response to her teenage daughter’s diagnosis with sudden onset multiple sclerosis (MS). As I’ve been working on this, I’ve had to wonder why it’s taken me so long to address this topic, as I spent quite a few years working with kids with HIV/AIDS, as well as having a son diagnosed with a chronic condition when he was a teen. Hmmm. One can speculate.

View this as a work in progress. While both the “Getting What You Need Checklist”  and Healing the Whole Person: Ways to Increase Well-Being are relevant for teens, by and large these are not handouts that would not appeal to them. In time, with a group of teens to lead the way, we will have versions of both of these documents for adolescents living with chronic conditions. Until then, this post will be more useful to parents, providers, teachers and adults who are working with adolescents.

Estimates are that about 2 million Americans  (6%) between the ages of 10-18, have a chronic condition that limits their activities of daily living. The most common are asthma, other chronic respiratory tract disease, musculoskeletal disorders and heart disease. Mental health issues can also appear during these years as the brain and body rapidly develop.

Ask any parent of an adolescent and they can tell you “it’s the best of times, it’s the worst of times.” The hormonal roller coaster alone can take the entire family on what feels like an out of control ride. Throw a chronic condition into the mix and it can be a very tough road.

Below are strategies and resources to help try and map a steadier course for all involved

Find a provider who works with teens if at all possible. Doctors, physician assistants and nurse practitioners that specialize in Family Medicine are often adept at this. Whether they have been trained in working with adolescents or not, one of the most helpful approaches is going to be: clear explanations in language they can understand, easy as possible treatment regiments to follow, and using specialists only when needed.

• Meet the teen “where they are at.” They network completely different than many adults, so providers need to understand that texting their cell phone to remind them of office visits, taking meds etc. maybe more effective than phone calls to home. Teens need an “e-prescription.” Give them links to good on-line resources-information about their condition, stories from teens who are living with similar chronic conditions and support groups. The parents also need their own e prescription.

Teens live life at a “tweeter length.” Short information is best. Even though their text messages and tweets are full of OMG, LOL, etc. (here’s a link to help with translation of text and chat room abbreviations) avoid using them. As my youngest e-mailed my husband, when he wrote IME (in my experience) “don’t do that again.” It’s their jargon and they prefer to keep it among themselves.

• The brains of adolescents are different. While adults look at them as being impulsive and self-absorbed, this is normal behavior for a growing and developing brain. Watch Sarah-Jayne Blakemore’s TED talk, “The Mysterious Workings of the Adolescent Brain.” 

Let Go. While all parents have their respective issues about “letting go,” there are unique challenges for the parent of a kid with serious health issues. Regardless, adolescents need to be encouraged to be independent, take care of their own health issues and develop their own set of coping skills. More than one adolescent has told me over the years, “I’m fine. I can do this, but she (and occasionally he or they) don’t trust me. “ The older they become, the more important it is to let them go to their medical appointments alone and form their own relationship with their care team. By the time they are 18, they  get to call the shots, so they need the skills sets to make the best possible choices.

Camps that are designed specifically for kids with special needs are a great place for starting the “letting go” process. See resources section for camp listings.

• School issues and self image are huge for this group regardless of health status. Looking different or having special needs compounds this problem and then some.   While there are lots of platitudes written about this “Encourage adolescents to share their concerns related to their body and how it may be affected by their illness or treatment” real concrete suggestions are needed.

When I was running Twin States, an organization for families dealing with various health conditions, we held a Family Camp and finally added a Kids Camp. The latter was the best thing we could do for our kids that were living with various health issues. As the kids aged, they became counselors in training and eventually counselors. It didn’t matter if the health conditions were the same they understood the isolation that comes from “being different.” Check the resource section below for a list of camps.

Helping adolescents connect to others who are experiencing similar issues is important. They can do this on-line or in person. If the medical  provider can’t offer information about groups, contact the local chapter of your condition specific organization (e.g. American Diabetes Association). If there is nothing out there that meets the need, start a Facebook page, chat room, blog or whatever format feels right for you.

The human is very social, at all ages, but particularly at adolescents. Bottom line-don’t go it alone. See the resource section for on-line support groups for teens.

•  Compliance with medical regiments, sticking to diets etc. are an issue no matter what your age. Yes, teens that have to be on special diets because of diabetes, celiac’s or another condition can have a hard time when out with friends or in other situations. The idea that you have to adhere to this the rest of your life, can be overwhelming and challenging for teens (like it isn’t for adults).

Having a son who became symptomatic with Celiac’s disease as a freshmen in college gave me some first hand experience in how difficult it is for them and a family. My son took to calling himself a “glutard,” and referring to his food as “freak food.” Through trial and error he has become an excellent cook and even I’m finding I prefer the cookies and pies that I make from nut flours and oats over those made from wheat flour. In short, it takes trial and error and a belief that it will be ultimately okay.

• Sibs have needs too. Younger and older siblings can be as impacted by a brother and sister with a significant illness just like parents, grandparents etc. Check out Sibling Support Project and if your community doesn’t offer Sibshop, consider becoming a facilitator.

Living in the present and mindfulness are important and there is currently a study Mindfulness Based Stress Reduction (MBSR) and teens. To learn more about this approach for helping teens with various types of health issues, go to Mindfulness Based Teen Program Pilot Phase. 

Camps for Children/Adolescents
The Hole in the Wall Gang Camp: Held at the Camp’s 344-acre facility in Ashford, Connecticut, Camp’s signature summer program consists of eight, weeklong sessions for seriously ill children aged 7-15, and one session for the siblings of children with serious illnesses. The camp is free with its primary catchment area being the Northeast. Other programs are offered through out the year. 

Hero’s Journey: A seven-day course of personal challenges, Wilderness First Aid and backcountry living at Camp for young adults aged 16-18 whose lives have been impacted by a chronic or life-threatening illness. Five sessions run per summer. 

On-line Support Groups for Teens
Internet Support Networks: Suggestions for a Safe and Sound Experience  Item 5 includes various on-line groups to consider.

Learning From Other Teens
• Finding Our Way: Stories from teens who are part of the Darmouth STAR (Steps Toward Adult Responsibility) program. 

Other Resources
• Dealing with a Chronic Condition: Site includes information for teens and parents. 

 Family Voices: Family centered care for all children and youth with special health care needs and/or disabilities 


  1. As a teen with a chronic medical condition, I can tell you that what you have written this post is SO TRUE! I think it can be hardest when you are diagnosed with a chronic condition as a teen because so much in your life is changing and it can make you feel very out of control and lost. It's a point in your life where you're starting to discover who you are, your direction and purpose... then, all of sudden, your life seems to crash down around you as you face your condition. Once again, great post!

    <3 Sky

  2. Am glad to hear from you and look forward to reading your blog. Adolescents is definitely challenging, yet, those teens that have to deal with issues similar to yours, make for some amazingly insightful adults.