Developmental complications of chronic illness

Teens who have an illness tend to have more concerns and fears when their illness or health care needs affect:

• Body image. Teens normally focus on the changes happening in their bodies. Chronic illness makes these concerns worse. They cause teens' fears or distortions about their bodies. For example, they may fear that a surgical scar will make them less attractive. Or that they won't be able to wear certain clothes. To help body image concerns:

  • Encourage your teen to share their concerns about their body and how it may be affected by their illness or treatment.

  • Tell your teen about possible side effects of medicines and treatment. Talk about ways to reduce or cope with them.

• Independence. Chronic illness often interferes with a teen's comfort in becoming less dependent on parents. Parents of chronically ill teens may resist the child's efforts to be independent. To help address the conflict between independence and the health care needs of the chronic illness:

  • Include your teen in discussions about their health. For instance, talk about how they feel about their illness and their treatment choices. Have them bring their medical questions. Include them in discussions during follow-up appointments.

  • Teach your teen self-care skills.

  • Urge your teen to track and manage their own treatment as much as possible.

  • Help your teen learn coping skills to address problems that might arise from their illness.

• Relationships with peers. Chronic illness and treatment often interfere with time spent with peers or at school. This is the teen's main social environment. Self-esteem issues can get worse due to chronic illness and treatment. To address these concerns:

  • Encourage spending time with friends as much as possible.

  • Discuss concerns about what to share with friends.

  • Help your teen find ways to respond if teased by their peers.

  • Encourage humor.

  • Urge and help friends be supportive.

  • Have a good relationship with your child's school so quick action can be taken if any bullying happens.

When teens don't follow medical treatment

As teens with chronic illness learn more about their illness and take responsibility for its management, they may make their own decisions. They may try taking less medicine. Or they may not take it at all. They may do it without talking first with their parents or doctor. This behavior is normal. But it may create the need for more health care.

A teen may feel angry or self-conscious about having a chronic illness. Or they may not cope well with their feelings about their illness. These may affect how they follow their treatment. For instance, teens with diabetes are more likely to use poor judgment in making food choices when they are with their friends. Parents and doctors can help them develop healthy ways of dealing with their chronic illness. To help your teen deal with their illness:

• Urge your teen to share their ideas and concerns with their doctor.

• When your teen's illness gets worse because they haven't been following treatment advice, talk with them about what happened. Don't scold.

• Teach problem-solving skills related to their illness. Ask questions, such as: "What do you think you would you do if ... ?"or "What do you think would happen if ... ?" Encourage teens to ask you the same kinds of questions.

• Get mental health services when:

  • Your teen seems overwhelmed with emotional issues.

  • Your teen has a pattern of not following their treatment.

  • Your teen's dependent behavior continues or gets worse. Or they lose interest in activities.

Transplant-related issues and teens

The emotional and psychological stress of needing an organ transplant affects all family members.

For teens, the idea of facing a transplant sets off concerns and questions about their bodies, their relationships, and their lives.

To help your teen cope well with a transplant:

• Be honest with your teen about their illness and their health care needs.

• Include your teen in discussions and decision-making. This is very important in helping them cope with the process and life after transplant.

• Communication is vital. Urge your teen to ask questions. Listen when they express their fears and feelings about how this affects their life.

• Concerns about dying are hard to talk about. But it's important to address with teens in any life-threatening situation.

• Encourage hopefulness.

• Encourage humor. It helps to reduce stress.

• Urge friends to visit your teen in the hospital, when possible.

• Get help from mental health providers to address fears, feelings, and behaviors that are hard to deal with for your teen or for other family members.

For more help

Call your teen's doctor right away if:

• Your teen feels extreme depression, fear, anxiety, or anger toward themselves or others.

• Your teen feels out of control.

• Your teen can’t sleep or eat for days in a row.

• Your teen acts in a way that concerns friends, family, or teachers, and others.

If your teen is in a crisis or has thoughts of suicide or self-harm, call or text 988 right away. This is the 988 Suicide & Crisis Lifeline. You will be connected to a trained counselor you can talk to. There's also an online chat option. You can also call Lifeline at 800-273-TALK (800-273-8255). The 988 Lifeline is free and available 24/7.