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.
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
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