Living with a long-lasting health condition (also called a
chronic illness) presents a person with new challenges. Learning
how to meet those challenges is a process - it doesn't happen
right away. But understanding more about your condition, and doing
your part to manage it, can help you take health challenges in
stride. Many people find that taking an active part in the care of
a chronic health condition can help them feel stronger and better
equipped to deal with lots of life's trials and
tribulations.
What Are Chronic Illnesses?
There are two types of illnesses:
acute
and
chronic
. Acute illnesses (like a cold or the flu) are usually over
relatively quickly. Chronic illnesses, though, are long-lasting
health conditions (the word "chronic" comes from the
Greek word
chronos
, meaning time).
Having a chronic condition doesn't necessarily mean an
illness is critical or dangerous - although some chronic illnesses,
such as cancer and AIDS, can be life threatening. But chronic
illnesses can also include conditions like asthma, arthritis, and
diabetes. Although the symptoms of a chronic illness might go away
with medical care, usually a person still has the underlying
condition - even though when properly treated he or
she may feel completely healthy and well much of the time.
Each health condition has its own symptoms, treatment, and
course. Aside from the fact that they are all relatively long
lasting, chronic illnesses aren't necessarily alike in other
ways. Most people who have a chronic illness don't think of
themselves as "having a chronic illness." They think of
themselves as having a specific condition - such as asthma, or
arthritis, or diabetes, or lupus, or sickle cell anemia, or
hemophilia, or leukemia, or whatever ongoing health condition they
have.
If you're living with a chronic illness, you may feel
affected not just physically, but also emotionally, socially, and
sometimes even financially. The way a person might be affected by a
chronic illness depends on the particular illness and how it
affects the body, how severe it is, and the kinds of treatments
that might be involved. It takes time to adjust to and accept the
realities of a long-term illness, but teens who are willing to
learn, seek support from others, and participate actively in the
care of their bodies usually get through the coping process.
The Coping Process
Most people go through stages in learning to cope with a chronic
illness. A person who has just been diagnosed with a particular
health condition may feel a lot of things. Some people feel
vulnerable, confused, and worried about their health and the
future. Others feel sad or disappointed in their bodies. For some,
the situation seems unfair, causing them to feel angry at
themselves and the people they love. These feelings are the start
of the coping process. Everyone's reaction is different, but
they're all completely normal.
The next stage in the coping process is learning. Most people
living with a long-term illness find that knowledge is power: The
more they find out about their condition, the more they feel in
control and the less frightening it is.
The third stage in coping with a chronic illness is all about
taking it in stride. At this stage, people feel comfortable with
their treatments and with the tools (like inhalers or shots) they
need to use to live a normal life.
So someone with diabetes, for example, may feel a range of
emotions when the condition is first diagnosed. The person may
believe he or she will never be able to go through the skin prick
tests or injections that may be necessary to manage the condition.
But after working with doctors and understanding more about the
condition, that person will grow to be more practiced at monitoring
and managing insulin levels - and it will stop feeling like such a
big deal. Over time, managing diabetes will become second nature
and the steps involved will seem like just another way to care for
one's body, in much the same way that daily teeth brushing or
showering help people stay healthy.
There's no definite time limit on the coping process.
Everybody's process of coming to terms with and accepting a
chronic illness is different. In fact, most people will find that
emotions surface at all stages in the process. Even if treatments
go well, it's natural to feel sad or worried from time to time.
Recognizing and being aware of these emotions as they surface is
all part of the coping process.
Tools for Taking Control
People living with chronic illnesses often find that the
following actions can help them take control and work through the
coping process:
Acknowledge Feelings
Emotions may not be easy to identify. For example, sleeping or
crying a lot or grouchiness may be signs of sadness or depression.
It's also very common for people with chronic illnesses to feel
stress as they balance the realities of dealing with a health
condition and coping with schoolwork, social events, and other
aspects of everyday life.
Many people living with chronic illnesses find that it helps to
line up sources of support to deal with the stress and emotions.
Some people choose to talk to a therapist or join a support group
specifically for people with their condition. It's also
important to confide in those you trust, like close friends and
family members.
The most important factor when seeking help isn't
necessarily finding someone who knows a lot about your illness, but
finding someone who is willing to listen when you're depressed,
angry, frustrated - or even just plain old happy. Noticing the
emotions you have, accepting them as a natural part of what
you're going through, and expressing or sharing your emotions
in a way that feels comfortable can help you feel better about
things.
Understand Other People's Reactions
You may not be the only one who feels emotional about your
illness. Parents often struggle with seeing their children sick
because they want to prevent anything bad from happening to their
kids. Some parents feel guilty or think they've failed their
child, others may get mad about how unfair it seems. Everyone
else's emotions can seem like an extra burden on people who are
sick, when of course it's not their fault. Sometimes it helps
to explain to a parent that, when you express anger or fear,
you're simply asking for their support - not for them to cure
you. Tell your parents you don't expect them to have all the
answers, but that it helps if they just listen to how you feel and
let you know they understand.
Because the teen years are all about fitting in, it can be hard
to feel different around friends and classmates. Many people with
chronic illnesses are tempted to try to keep their condition
secret. Sometimes, though, trying to hide a condition can cause its
own troubles as Melissa, who has
Crohn's disease
, discovered. Some of Melissa's medications made her look
puffy, and her classmates started teasing her about gaining weight.
When Melissa explained her condition, she was surprised at how
accepting her classmates were.
When talking to friends about your health condition, it can
sometimes help to explain that everyone is made differently. For
the same reason some people have blue eyes and others brown, some
of us are more vulnerable to certain conditions than others.
Depending on the severity of your illness, you may find yourself
constantly surrounded by well-meaning adults. Teachers, coaches,
and school counselors may all try to help you - perhaps causing you
to feel dependent, frustrated, or angry. Talk to these people and
explain how you feel. Educating and explaining the facts of your
condition can help them understand what you're capable of and
allow them to see you as a student or an athlete - not a
patient.
Keep Things in Perspective
It's easy for a health condition to become the main focus of
someone's life - especially as that person first learns
about and starts dealing with the condition. Many people find that
reminding themselves that their condition is only a part of who
they are can help put things back in perspective. Keeping up with
friends, favorite activities, and everyday things helps a lot.
Play an Active Role in Your Health Care
The best way to learn about your condition and put yourself in
control is to ask questions. There's usually a lot of
information to absorb when visiting a doctor. You may need to go
over specifics more than once or ask a doctor or nurse to repeat
things to be sure you understand everything. This may sound basic,
but lots of people hesitate to say, "Hey, can you say that
again?" because they don't want to sound stupid. But it
takes doctors years of medical school and practice to learn the
information they're passing on to you in one office visit!
If you've just been diagnosed with a particular condition,
you may want to write down some questions to ask your doctor. For
example, some of the things you might want to know are:
- How will this condition affect me?
- What kind of treatment is involved?
- Will it be painful?
- How many treatments will I get?
- Will I miss any school?
- Will I be able to play sports, play a musical instrument, try
out for the school play, or participate in other activities I
love?
- What can I expect - will my condition be cured? Will my
symptoms go away?
- What are the side effects of the treatments and how long will
they last?
- Will these treatments make me sleepy, grumpy, or weak?
- What happens if I miss a treatment or forget to take my
medicine?
- What if the treatments don't work?
Even though your doctor can't exactly predict how you'll
respond to treatment because it varies greatly from one person to
the next, knowing how some people react may help you prepare
yourself mentally, emotionally, and physically. The more you learn
about your illness, the more you'll understand about your
treatments, your emotions, and the best ways to create a healthy
lifestyle based on your individual needs.
Living With a Health Condition
There's no doubt the teen years can be a more challenging
time to deal with a health condition. In addition to the social
pressures to fit in, it's a time of learning about and
understanding our bodies. At a time when it's natural to be
concerned with body image, it can seem hard to feel different.
It's understandable that people can feel just plain sick and
tired of dealing with a chronic illness once in a while.
Even teens who have lived with an illness since childhood can
feel the pull of wanting to lead a "normal" life in which
they don't need medicine, have any limitations, or have to care
for themselves in any special way. This is a perfectly natural
reaction. Sometimes teens who have learned to manage their illness
feel so healthy and strong that they wonder whether they need to
keep following their disease management program. A person with
diabetes, for example, may consider skipping a meal when at the
mall or checking his or her blood sugar after the game instead of
before.
Unfortunately, easing up on taking care of yourself can have
disastrous results. The best approach is to tell your doctor how
you feel. Talk about what you'd like to be doing and can't.
See if there's anything you can work out. This is all part of
taking more control and becoming a player in your own medical
care.
When you're living with a chronic health condition, it can
feel hard at times to love your body. But you don't have to
have a perfect body to have a great body image. Body image can
improve when you care for your body, appreciate its capabilities,
and accept its limitations - a fact that's true for everyone,
whether they're living with a chronic condition or not.
Voicing any frustration or sadness to an understanding ear can
help when a person feels sick of being sick. At times like this
it's important to think of ways others could help and ask for
what you'd like. Some people find they can ease their own sense
of loss by reaching out and offering to help someone in need.
Lending a hand to someone else can help one's own troubles seem
easier to manage.
Adjusting to living with a chronic illness takes a little time,
patience, support - and willingness to learn and participate.
People who deal with unexpected challenges often find an inner
resilience they might not have known was there before. Many say
that they learn more about themselves through dealing with these
challenges and feel they grow to be stronger and more self-aware
than they would if they'd never faced their particular
challenge. People living with chronic illnesses find that when they
take an active role in taking care of their body, they grow to
understand and appreciate their strengths - and adapt to their
weaknesses - as never before.
Reviewed by:
Elana Pearl Ben-Joseph, MD
Date reviewed: January 2007
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
© 1995-2009 The Nemours Foundation/KidsHealth. All rights reserved.