Helping Your Teen Cope with Chronic Illness

Helping your child adjust

• Acknowledge your child's feelings about their diagnosis. Your child may be angry, upset, or scared. This is normal and expected. Give your child comfort. And be honest with your child about their condition. Give your child information in a way that is right for their age. If you're not sure how to do so, ask your child's health care provider for help.

• Check in with your child often about:

  • How they are feeling emotionally and physically.

  • Questions they may have about the illness and the reasons for certain parts of their treatment plan.

  • How well they are following their treatment plan.

  • How much help your child wants from you. Let your child tell you how much responsibility they feel able to handle.

• Praise your child for taking an active part in their treatment and following directions without resistance.

• Encourage your child to write down questions they have about their condition. Ask providers these questions during office visits.

• Check to see if there are peer support groups for your child's condition in your area. Give your child the information, but don't force them to go.

• Don't yell or get angry if your child won't follow their treatment plan entirely. Instead, work with your child and their provider. Discuss ways to adjust the treatment plan so your child will be more willing to follow it.

• Let your teen be a teen. As much as possible, let your child do things that their friends are doing, such as sports, after-school activities, and field trips.

• It's common for a responsible teen to have burnout when caring for a chronic illness. If this happens, it's OK for you to take over some responsibilities from your child until they're ready to take them back.

Keeping your perspective

After the diagnosis of a chronic illness, you and your child have new challenges. But never forget that your child is still a child. Don't let the illness dictate how you parent or change your relationship with your child. Here are some tips:

• Stick to your rules. Maintain discipline, rules, and boundaries for your child. Don't let your child off the hook in terms of behavior or responsibility because of the illness.

• Don’t be overprotective or overbearing. You may be tempted to control your child's choices and actions to help keep them safe. But this will hurt your child in the long run. Let your child take some responsibility. This may mean that your child makes mistakes. But learning from mistakes is an important part of growing up.

• Keep it normal. Treat your child like a normal teen as much as possible.

• If you have other children, be sensitive to their needs. Siblings may show fear and anger about the changes in family dynamics and the attention given to the child with the chronic illness. This is especially true if the illness is unstable and requires frequent emergency room visits or hospitalizations. Sibling support groups can be helpful. Ask your child's health care provider, school counselor, or school psychologist about resources for siblings.

Following up with your child's health care provider

Make sure your child sees their health care provider regularly. But don't let the chronic illness overshadow the rest of their health care needs. Take your child to see a primary care provider for regular checkups and to discuss normal teen concerns.

Watching for anxiety or depression

It's common for children to have challenges as they adjust to living with a chronic condition. In the short term, worry, sadness, or fear is to be expected. But if they last, they may be signs of a more serious problem. Tell your child's health care provider right away if your child:

• Cries too much of the time.

• Has big changes in appetite or weight.

• Is not sleeping, or is sleeping too much.

• Talks about feeling hopeless or worthless.

• Loses interest in family, friends, or activities that they once enjoyed.

• Engages in reckless or risk-taking behavior, including the use of alcohol and illegal drugs.

• Has increased irritability.

• Talks about death or suicide.

When to get help

Family and friends are often the first to recognize the warning signs of suicide. Suicidal thoughts or actions are not a harmless bid for attention. They are a sign of extreme stress and shouldn't be ignored.

Get help from people or agencies specializing in crisis, such as:

• Suicide and Crisis Lifeline at 988lifeline.org or call 988 or 1-800-273-TALK (800-273-8255)

• Crisis Text Line at www.crisistextline.org or text HOME to 741741. A trained crisis counselor receives the text and responds. The crisis counselor will help calm the situation. It's free and private.

• National Institute of Mental Health at www.nimh.nih.gov or 866-615-6464

• National Alliance on Mental Illness at www.nami.org or 800-950-6264

• Mental Health America at www.nmha.org or 800-969-6642

Be sure your teen and close family and friends also have these resources.

Call or text 988

If your teen is at immediate risk of harming themselves or others, call or text 988. Don't leave them alone. Take action. Remove anything that can cause harm, like guns, rope, or stockpiled pills.

When you call or text 988, you will be connected to trained crisis counselors at the Suicide and Crisis Lifeline. Or you can chat online at 988lifeline.org. Lifeline is free and available 24/7. 988 counselors will help you get the support you need.

Getting support

When your teen has a serious chronic illness, it affects everyone in the family. Ask your child's health care provider and at your child's school for resources and support. Also reach out to friends and family for help.

Consider a support group. In a support group, you and your teen can talk with others in the same situation. These groups can offer advice, help, and understanding. There are groups for specific health conditions. And there are groups for parents, teens, siblings, and families. Ask your child's provider or other providers about local support groups. Or call your local hospital and ask for referrals. Below are questions to ask:

• What resources are available in your community to help with your teen's chronic illness?

• How can you encourage your teen's growing independence, but still give your teen the right amount of help?

• Is there a support group for teens with your teen's diagnosis?

• Does the school, clinic, or hospital offer support staff or services to help your teen and the rest of your family?

• How can you support your teen's education?

Work with teachers to help your teen keep up with schoolwork. Your teen should qualify for school accommodations under Section 504 of the Rehabilitation Act of 1973. Your child's health care provider can assist your child in getting these accommodations by writing a letter to the school.