Most books and articles written about chronic illness are targeted for adults with diseases. Much information, all of which is very valuable, is given about the particular disease, such as its symptoms, treatment, and lifestyle changes necessitated. But there is a unique population that is not addressed often enough in this written material: the adolescent with chronic illness.
Although children and adolescents may experience many of the same problems living with a chronic illness that adults do (such as pain, other physical symptoms, or medication side effects), certain problems are more exclusive for adolescents.
This article will address a sampling of the problems that may affect adolescents with chronic illness. Rarely will an adolescent with chronic illness experience every psychological consequence of a chronic illness; however, it is important for everyone involved–parents, friends, educators, and healthcare professionals–to be aware of, and sensitive to, these difficulties.
It is interesting that adolescents, more than virtually every other age group, have a common, non-verbalized (and sometimes loudly verbalized) belief about their medical status: “I’m fine!” They don’t want to feel sick; they don’t want to be sick, and they don’t want to be different. But chronic illness may throw a monkey wrench into that.
What makes it especially difficult, though, is that unless a chronic illness is affecting the young person to such a degree that he/she is literally unable to function, in many cases the young person’s attitude will continue to be, “I’m fine.” This can be frustrating for other family members, who are trying to be protective and helpful, and for healthcare professionals, who have more difficulty treating a young person if the answers to questions about symptoms are evasive or denying.
Adults who work generally have a clear sense of their responsibilities and obligations at their jobs; they know that if they don’t work, changes will result– many of which can be difficult and unpleasant. The adolescent’s primary “job” is to go to school. For adolescents with chronic illness, the attitude about school varies. Some are upset and frustrated if their illness interferes with consistent school attendance and schoolwork performance. Others see school as less important and may have few or no qualms about missing excessive time in school.
Adolescents with chronic illness may have a more difficult time in school if they have to deal with hostility or criticism from their classmates or friends. (“Why can’t you go out with us tonight?”) or the ignorance of teachers (“You’ve missed too much school work; either get with the program or you’re going to fail.”) In addition, because of chronic illness, adolescents may find themselves ostracized and even excluded from activities that were once within their physical capabilities.
Peer pressure problems may affect young people with chronic illness. The need to fit in–at its strongest during adolescence–can be devastating to someone who now has a chronic illness with noticeable physical effects (e.g., rashes, bloating, hair loss, disfigurement, etc.) and behavioral effects (slower, more painful movements, etc.). It is heartwarming to hear stories of young people with chronic illnesses whose friendships continue despite their illness. Yet it is sad to hear of other stories in which the adolescent with a chronic illness is ridiculed and even abandoned by former friends.
Adolescents with chronic illness may have difficulties with parents being overprotective (“Stay inside, the sun is out.”), not protective enough (“You want to go to the beach? Do whatever you want.”), or insensitive to their needs (“Stop complaining about your pain already. Get up and finish your schoolwork.”). With adolescents trying to break free of childhood and enter the world of adulthood, any of these parental reactions may be difficult for them to understand.
Parents may be concerned about the effects their child’s chronic illness will have on the family, such as financial issues, problems with or neglect of other children, or even feeling as though their independence is being inhibited. Any of these concerns can likewise affect the young person with chronic illness. Already unhappy because of having a chronic illness, but feeling responsible for problems within the family or with the parents, an adolescent may feel guilt to the extent that it interferes with physical–and emotional–health.
For example, the young person may not tell parents about a serious physical symptom, knowing that it might mean another trip to the doctor or even the possibility of hospitalization.
Brothers and sisters of an adolescent with chronic illness may be very resentful. Being less able to understand the physical impact of the disease, they may dislike the added “attention” being directed at their sick sibling. They also may not like getting less attention and may act out in an attempt to regain their “share” of parental interactions. Their resentment toward their sick sibling may be manifested in many hurtful ways, such as anger, ignoring instructions, spiteful behavior, concealing important information from their parents, etc.
A final note…
It is difficult enough for anyone to live with chronic illness, but the adolescent with a chronic illness has added, age-related problems. Being aware of the potential impact of chronic illness in young people does not eliminate these problems. But increased awareness can pave the way to a better understanding of the unique needs of adolescents, and it can lead to methods for better alleviating the problems that may occur.
Some helpful suggestions…
♦ Be sensitive to the adolescent’s unique needs. Chronic illness can be difficult to live with, especially for an adolescent who has less “life experience” and consequential coping strategies in place. Don’t assume that the young person has the emotional strength or the social support network to handle chronic illness-related problems successfully.
♦ Communicate appropriately. Try to look at any chronic illness-related issues through the eyes of the adolescent. See what the young person sees. Feel what he/she feels. Issuing commands or using anger and aggressiveness in forcing issues is rarely productive. Calm, constructive discussion is a much more positive way to address chronic illness-related issues.
♦ Try to treat the adolescent as an adult. Plan together the appropriate ways to treat, and live with, chronic illness. The more you treat the adolescent like an adult, the more likely it is that this will generate adult-like behavior in return.
♦ Educate significant others. Any individuals who are not familiar with living with medical problems, including family members, friends, and teachers, can be obstacles to successful living with chronic illness. This is especially important in school since the adolescent is going to spend a good number of hours there each day. Provide pamphlets and other information to teachers, guidance counselors, and even classmates, so that school can truly be a “home away from home.”