Think of chronic pain, and a young person is likely not the first image to pop in your mind. About 5% of children and adolescents live with the condition, however, according to research from the American Pain Society.

Their burden is largely silent, yet no less burdensome than an adult with pain. Young people with chronic conditions experience an overall decline in quality of life, miss more school than others their age, and take more medication.

The experience can be socially isolating and have real impacts on a child’s ability to go on and live a healthy, well-adjusted life. It’s not so much that living with pain stunts a child’s development, but the isolation it may cause, reports Everyday Health. The health site says:

[Children] can develop emotional and psychological scars from their pain that color future choices concerning their lives and health care.”

In addition to the lasting mental implications, pain in childhood is associated with a higher risk for lasting pain in adulthood. Research from the American Pain Society found that experiencing pain as a child increased the risk of developing fibromyalgia or other type of chronic pain as an adult.

The good news is that pediatric chronic pain is growing as a medical specialty, giving patients and their families more answers. Two decades ago, nobody talked about these issues, says Dr. Tonya Palermo, with Seattle Children’s Hospital. Today, much more is known about helping young people manage their conditions.

What types of chronic pain do young people experience?

Children may experience many of the same conditions that adults face. That may include headaches, or lasting pain in the legs, stomach, or back. Sometimes this pain indicates a more serious condition, such as cancer. It may also indicate conditions more commonly seen in adults, like arthritis, fibromyalgia, or complex regional pain syndrome.

Some young people develop rare, lifelong conditions and must learn how to live with them. A woman named Allie received a diagnosis of adhesive arachnoiditis at the age of 22. The incurable disorder involves painful inflammation of membranes surrounding the spinal cord.

Allie connected with fellow patients on a Facebook group, but the disease’s rarity left her feeling isolated. She writes in National Pain Journal:

As if chronic pan isn’t isolating enough, I really felt like I was totally on my own, left to figure it all out.”

The doctors she visited knew little about her condition and instead of seeking to learn, belittled Allie and tried to convince her the pain was all in her head. She soon became overwhelmed with all the different types of treatment options and began to distance herself from the noise to tune into her intuition, to listen to her body’s messages. She writes:

“To silence the mind is a tall order for chronic pain sufferers, however as I practiced, I noticed. My senses became tuned into instinctual subtleties my persistent conscious mind overlooked. As I noticed throughout different treatments how my body would react I realized that I had honed in on my wonderful intuition…This was the single best action I could take.”

As Allie grew increasingly present, she noticed in her body which treatments helped the most. She recommends that other patients gather as much information as possible, be their own advocates, ask questions and demand answers, and most of all, listen to the body and the intuition because they tell you what they need.

Young people in chronic pain turn to Internet for answers

Allie found her most helpful support system and sources of information online, but research shows other young people are wary of sharing health-related information on the web.

Research from Northwestern University found most teens—88%—avoid discussing health concerns on Facebook or other social sites, often citing privacy concerns. But 84% of those surveyed do use the Internet to research information about topics like depression, drugs, and sex.

About one-third of teens said the information they learned led to changes in their behavior, such as lifting a depressed mood through exercise or reducing soda consumption. Mobile apps are also popular among teens, with about 21% of those surveyed downloading the programs onto their phones. Report co-author Vicky Rideout says:

“The Internet is clearly empowering teens to take care of their own health.”

The study was the first in over ten years to investigate how teens use technology for health concerns. The study’s rarity shows how infrequently young people are researched.

More medical research in children and teens is needed, researchers say

Recruiting minors for research is difficult because of ethical concerns related to informing them about the study procedures. This unfortunately results in a shortage of studies examining the effects of medical care, according to a report by the Nuffield Council on Bioethics. Council Professor Bobby Farsides says:

“It will always be easier to say ‘no’ to research with children on the grounds that it’s too difficult, but we should challenge the idea that it is acceptable to continue to offer healthcare to children without seeking to improve the evidence base for many of the treatments provided.”

The implications of this limited research are significant. For example, doctors often aren’t sure how medications affect children, only adults, and must guess dosages in hopes of getting it right. Researchers said that as soon as children are able to voice their opinions, adults and the medical community should take those opinions seriously instead of waiting until children turn 18.

Subcultures embrace the disabled

A bright spot in the overall growing awareness levels and connectivity through the Internet are subcultures like the so-called “geek culture” that generally embrace all people, regardless of physical condition.

Many young people with chronic pain may gravitate towards these cultures. With limited mobility, playing video games can be an especially enjoyable hobby. Games are increasingly social, too, played over the Internet, allowing teens to connect with like-minded people.

And at events like Comic Con, the international event celebrating comics as an art form, event organizers have established a Deaf and Disabled Services department. The department organizes accommodations for the disabled, including resting areas and special limited seating areas for larger, standing events.

In this way, while young people with chronic pain are a small minority, they can still find acceptance in a community.

Do you know any young people living with chronic pain?

Image by ClickFlashPhotos / Nicki Varkevisser via Flickr