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The Stresses Faced By Teenagers Who Are Chronically Ill or Disabled

​In the immediate aftermath of a diagnosis, expect your teen to ask countless questions:

  • “Is this going to affect the way I look?”

  • “Am I going to have to miss a lot of school?”

  • “Don’t tell me I won’t be able to go out for the lacrosse team this year!”

  • “What if the other kids laugh at me because the chemotherapy makes my hair fall out?”

These questions may demand thoughtful, well-informed answers. Bear in mind that young people’s fears about medical matters may be based on misinformation. For instance, a patient recently diagnosed with Hodgkin’s disease might sadly conclude that he doesn’t have long to live. After all, everyone knows that cancer is deadly; only the year before, his favorite aunt died of ovarian cancer.

What he needs to hear from both his doctor and his parents is that there are more than one hundred forms of cancer—many of them highly treatable. In addition, the outlook for children’s malignancies tends to be more favorable than for adult tumors. Hodgkin’s disease happens to be the most curable pediatric cancer; nine in ten kids live five years from the time of diagnosis, at which point they can essentially be declared cured.

Another frequent source of anxiety is upcoming medical tests and procedures. A fourteen-year-old boy slated to undergo magnetic resonance imaging (MRI) is utterly convinced that the scan is going to hurt. It’s got to: "Did you see the size of that machine? Or what if it zaps me and I become radioactive?!"

The scanner is an imposing piece of equipment, to be sure. But he’ll be relieved to hear tha​t an MRI uses electromagnetic energy, not radiation, to visualize the body. He won’t feel any pain, and he most certainly won’t glow in the dark. A kid who is prone to claustrophobia, though, may turn panicky when the portable examining table draws her into the narrow tunnel. Mom and Dad, as her advocates within the medical system, should alert the doctor ahead of time about her aversion to confined spaces. He might prescribe a mild shortacting sedative to be taken prior to the test or arrange for an “open” MRI scanner to be used.

To find out what your child can expect, ask the physician or one of the nurses to describe the procedure step by step. Many medical practices routinely provide informative, illustrated pamphlets beforehand.

An adolescent should feel that he can always share what is worrying him. But, kids don’t always say what’s on their minds. In addition to being active, empathetic listeners, we need to anticipate what they may be feeling.

“Honey, you seem a bit down today. I know that having diabetes is hard for you sometimes...”

“Yeah, a little down... A lot, really."

“What is it exactly that’s bothering you? Maybe I can help.”

“I’m just scared, that’s all.”

“Scared about the future?”

“Yeah, that. What if one of those terrible things that happens to people with diabetes happens to me, like losing my sight? Or what if the diabetes messes up my kidneys? I don’t want to have to go on one of those artificial kidney machines. I can’t believe I’m seventeen and have to worry about this stuff. It’s not fair!”

Perhaps nothing we say will dispel our child’s sadness or resentment or rage at being saddled with a health problem. However, listening nonjudgmentally and letting our children know they can talk to us any time is beneficial. For a young person, the realization that he can express his feelings freely, without being told, “You shouldn’t be (angry, depressed, etc.),” is psychologically therapeutic in itself.

Honesty Is the Best Policy

Some mothers and fathers deliberately conceal all details of the illness from the young patient, operating under the misconception that they are safeguarding their child from potentially devastating news. Seriously ill teenagers instinctively know about their condition. Ironically, they frequently refrain from discussing this with Mom and Dad for much the same reason: to protect their grief-stricken parents.

How do they know? Their bodies tell them. In addition, no matter how careful the adults around them are, kids glean fragments of conversations and take notice of grim expressions. Ultimately, to deny a sick person the truth about his condition is an unintentionally selfish act; all the more so in the setting of a terminal disease. Children need to talk about what they’re feeling—including their fears, their conceptions of death and dying; whatever is on their minds. No one should take away their right to talk about these issues.

On the other hand, while it’s important to answer questions honestly, try to emphasize the positive whenever possible. Let’s return to the earlier example of the adolescent diabetic who is concerned that he might develop a serious long-term complication. His mother and father might say something like this:

“The doctor doesn’t know for sure what’s going to happen years from now. But most kids with diabetes go on to live normal life spans. We’re confident that you will, too. The best thing we can do is to make sure that you stay healthy by keeping your blood sugars within a normal range. Never think that you’re all alone in this; we’re here to help you, and so are your brothers and sister.”

Tips for Reducing Anxieties

  • Techniques such as deep breathing, progressive muscle relaxation and visualization can help to soothe jangled nerves before and during medical procedures.

  • Tell your teenager about thought stopping, which will allow him to control the mind instead of the other way around. Each time a negative thought comes a-knocking—about an impending needle stick, for example—the teenager literally orders his brain to switch channels. “Okay, stop it! Turn off that thought right now! Think about something else.” It may sound overly simplistic, but with practice, this method can be extremely effective.

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Caring for Your Teenager (Copyright © 2003 American Academy of Pediatrics)
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.
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