Psychological complications of chronic illness
What is a chronic illness?
Simply put, a chronic illness is one that lasts for a long period of time and requires ongoing care. Children and teenagers can suffer from a wide range of chronic illnesses, including but not limited to:
- heart problems
- inflammatory bowel disease
- conditions requiring an organ transplant
- attention-deficit/hyperactivity disorder (ADHD)
Why does chronic illness cause psychological stress for many children?
If your child has a chronic illness, she might also have issues with:
Chronic illness intensifies the normal self-consciousness and concerns about physical appearance and development that all children and adolescents feel. Kids with a chronic illness may struggle with body image worries or distortions related to their illness (for example, fearing a surgical scar makes them unattractive, or that swelling caused by a medication won’t allow them to wear certain clothes).
Children and teens become gradually more independent as they age. However, a chronic illness often makes it difficult for children to reduce dependence on their parents. In addition, parents of chronically ill children can be more resistant to their child’s efforts to act more independently—and can become overprotective or overly restrictive out of a well-intentioned desire to keep the child safe.
A healthy and active social life is very important, especially for adolescents and teens. A child with a chronic illness may feel that her treatments and hospital stays keep her “out of the loop” at school and with friends. She may feel lonely, envious or unable to relate to other children her age. A chronically ill teenager may worry that his illness makes him unattractive and will prevent him from having a romantic relationship.
How can mental health treatment help chronically ill children?
Children with chronic illnesses—and their parents—can become so caught up in treatments, medications and hospitalizations that they neglect their emotional and mental health. The anxiety, self-consciousness, anger and other feelings that accompany a chronic illness are just as significant and disruptive as medical complications can be—and just as deserving of treatment.
A qualified mental health professional can work with chronically ill kids and their families to:
- identify, vocalize and manage their feelings
- learn coping strategies
- build self-esteem
- improve relationships with family and peers
- learn to define themselves by much more than their illness
|Children's Experience Journal gives kids with chronic illnesses a voice|
Children’s psychiatrist-in-chief David DeMaso, MD, and members of his team have created the Experience Journal, an online collection of thoughts, reflections and advice from kids and caregivers dealing with chronic physical and mental health illnesses.
Signs and symptoms
What are some of the signs that might indicate my child needs help dealing with the mental, social and behavioral health aspects of his illness?
All children (and especially adolescents and teens) experience emotional ups and downs—and not every child with a chronic illness will require mental health support.
However, you should watch carefully for the following signs that your child may need professional mental health treatment:
- he seems overwhelmed or consumed by the emotional toll of his illness
- he has poor self-esteem because of his illness, and criticizes himself as being “ugly,” “defective” or “worthless”
- he resists or avoids following his treatment plan (including skipping medication or missing medical appointments)
- he resists going to school because of self-consciousness or embarrassment about his illness
- he withdraws from peers or gives up on taking part in age-appropriate activities and gatherings
- his behavior regresses (he becomes overly dependent on parents or medical caregivers)
|Fitting in after a hospital stay|
Although Cole Pasqualucci was returning home from Children's, he was returning to a very different life than he was used to. Learn more about Cole's journey.
Questions to ask your doctor
You and your family play an essential role in your child’s treatment for his psychological symptoms, just as you do for his medical illness. It’s important that you share your observations and ideas with your child’s treating mental health clinician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.
You’ve probably thought of many questions to ask about your child’s psychological stress as relates to her illness. It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your child’s appointment. That way, you will have all of your questions in front of you when you meet with your child’s treating clinician and can make notes to take home with you. (If your child is old enough, you can encourage him or her to write down questions, too.)
Initial questions to ask your doctor might include:
- What are the mental health treatment goals for my child?
- How can I encourage my child to talk to me and ask questions about his illness, treatment and feelings?
- What role should I play in my child’s treatment?
- How should I respond if my child is resisting or avoiding his medical treatment?
- How long do you expect my child to need therapy?
- How can I tell if my child is making progress?
- Should I involve my child's school in his mental health treatment, and if so, how?
- Will you prescribe psychiatric medication for my child? If so, what are the possible side effects of this medication and how can you ensure that it does not interfere with other medications he is taking?
- How can my family and I best support my child through treatment?
- Does anything in my child’s day-to-day routine need to change?
- How long will it take for my child to start feeling “back to normal”?
- What other resources can you point me to for more information?
Q: Are chronic illnesses common in children and teens?
A: Chronic illnesses affect a significant portion of children, adolescents and young adults. Statistics report that, here in the U.S.:
- At least 10 to 15 percent of children have a chronic illness.
- Nearly 1 in 5 young people between ages 6 and 19 are obese.
- 6.5 million children under the age of 18 have been diagnosed with asthma—the most common chronic illness in childhood.
- Approximately 690,000 children and adolescents have some type of epilepsy.
- At least 2 million children have attention-deficit hyperactivity disorder (ADHD).
Q: What’s the best way to deal with the psychological complications of my child’s medical illness?
A: As is the case in treating any mental health complication, parents play a vital support role in helping a chronically ill child cope with psychological stress.
The best thing you can do is be an active and informed participant in your child’s physical and mental health care, and to keep the lines of communication open and honest.
Specifically, you should:
- encourage your child to share concerns about his body and appearance, and how it may be affected by his illness or treatment
- inform your child about any physical side effects that may be caused by medications and treatments
- talk to him about ways to reduce or cope with these side effects
- involve him in discussions about his health and treatment (both with clinicians and with other family members)
- teach him self-care skills related to his illness (for example, administering insulin shots if he is diabetic, or knowing how to use an Epi-Pen for a food allergy)
- encourage him to monitor and manage his own medical care as much as possible
- encourage him to spend time with friends and to participate in school and community social activities
- discuss with him any concerns he may have about what to tell (and not tell) his peers about his illness
- work with him to respond to any teasing or bullying about his illness
- encourage him to have a healthy sense of humor
- for a younger child, offer to talk to his classmates about his illness
- teach him to adapt and use problem-solving skills
- if he is not following his treatment plan as prescribed, have a frank conversation with him about why (without being overly critical or punishing him)
Q: Why is psychotherapy so helpful in these cases?
A: Psychotherapy (“talk therapy”) has proven to be an extremely effective method of helping children understand and express their feelings. It also is an invaluable way for a child to learn new ways of coping with stress and to develop healthy, constructive behaviors.
Here at Children’s, an experienced mental health professional will use psychotherapy to help your child respond to feelings of sadness, worry and anger related to his chronic illness. Therapy will teach your child:
- how to vocalize his feelings and concerns
- techniques (such as deep breathing, meditation, exercise and mentally picturing a relaxing place or scenario) for reducing stress
- new thought patterns to replace the destructive ones
- to build hope and a strong self-image
Q: Why do some children need antidepressant or anti-anxiety medication for their psychological symptoms?
A: Some children may need an antidepressant or anti-anxiety medication to ease their feelings of sadness, hopelessness and worry to a manageable degree, so that they can begin to benefit from psychotherapy.
Here at Children’s, medication is never a standalone treatment—we only prescribe it in conjunction with talk therapy. Your treating clinician will work with you and your child to decide whether medication can be a useful addition to the treatment plan, to understand any side effects that may occur and to ensure that there are no complications with your child’s existing medications and treatments for his chronic illness.
Learn more about how Children’s prescribes psychiatric medication.
|Teen Advisory Committee ensures patients’ voices are heard|
In 2002, Children’s developed the Teen Advisory Committee—bringing together a group of patients, ages 14 to 21, to advocate for their peers throughout the hospital. Learn more.