Your teen has recently been diagnosed with a chronic illness. This is an illness that lasts long-term and may have no cure. Examples of chronic illnesses are asthma, depression, eating disorders, juvenile rheumatoid arthritis, migraines, and diabetes. The teen years are a time of great emotional and physical change. And a chronic illness can add more issues and challenges for both you and your teen. But there are things you can do to help you and your child cope.
Acknowledge your child's feelings about his or her diagnosis of an illness. Your child may be angry, upset, or scared. This is normal and expected. Give your child comfort. But don't shelter your child from the truth about their condition.
Check in with your child often about:
How they are feeling, emotionally and physically
If they have questions about the illness and the reasons for certain parts of the treatment plan
If they are following the treatment plan
If your child wants you to do more or less to help (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.
Don't yell or get angry if your child won't follow their treatment plan entirely. Instead, work with your child and their healthcare 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 not uncommon for a responsible teen to burn out on taking care of 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.
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.
Be sensitive to your other children's needs. Siblings may show fear and anger about both the changes in family dynamics and the attention required by the brother or sister 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 especially helpful in these situations. Your healthcare provider or school counselor and school psychologist may be able to provide resources for siblings.
Make sure your child sees their healthcare provider regularly. But don't let the chronic illness overshadow the rest of their healthcare needs. Take your child to see a primary care provider for regular checkups and to discuss normal teen concerns.
It's normal for your child to have trouble adjusting to having 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 healthcare provider right away if you notice any of these:
Big changes in appetite or weight
Not sleeping or sleeping too much
Talking about feeling hopeless or worthless
Loss of interest in family, friends, or activities that were once enjoyed
Increase in reckless or risk-taking behavior including the use of alcohol and drugs
Talking about death or suicide
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.
If your teen talks about suicide and has the means to carry it out: Don't leave them alone. Take action. Remove the means, such as guns, rope, or stockpiled pills.
Go to the nearest hospital emergency room or 24-hour walk-in crisis clinic.
Get help from people or agencies specializing in crisis such as:
National Suicide Prevention Lifeline (crisis hotline) 800-273-TALK (8255)
National Institute of Mental Health 866-615-6464 www.nimh.nih.gov
National Alliance on Mental Illness 800-950-6264 www.nami.org
Mental Health America 800-969-6642 www.nmha.org
National Suicide Hotline 800-SUICIDE (800-784-2433)
The Crisis Text Line is a free, confidential resource available 24 hours a day, 7 days a week. Text HOME to 741741. A trained crisis counselor responds with support and information via text message. Refer to: https://www.crisistextline.org.
Be sure your teen and close family and friends also have these resources.
If there is an immediate risk of self-harm, call 911.
When your teen has a serious chronic illness, it impacts everyone in the family system. 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 conditions. There are groups for parents, teens, siblings, and families. Ask your child's healthcare provider or other providers about local support groups. Or call your local hospital and ask for referrals.
Ask your child's healthcare provider for good resources about your child's illness. Ask the provider for some reliable online sources. Below are some suggestions for general information on coping with chronic illness.
C. Everett Koop Institute geiselmed.dartmouth.edu/koop/resources/chronic_illness
American Psychological Association www.apa.org/helpcenter
American Pediatric Association www.healthychildren.org
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