MENTAL HEALTH GUIDE
Coping with Chronic Illness
A chronic illness is a physical condition that lasts more than 12 months and impacts day-to-day functioning (e.g., asthma, diabetes). It is estimated that between 20-40% of children and adolescents in the United States have at least one type of chronic illness. The stress related to a child having a chronic illness can impact the whole family. Children may worry or wonder about their identities and future, parents can find their roles and priorities shifting, and siblings can feel left out and scared. It is common for families to grieve the loss of opportunities and sense of security they may have had prior to a chronic illness diagnosis.
If your child expresses thoughts of wanting to harm themselves or others, call 9-1-1 or visit the nearest emergency department.
988 Suicide and Crisis Lifeline:
Text any message to 9-8-8
Chat online at 988lifeline.org/chat
Crisis Text Line:
Text “HOME” to 741741
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ARCH National Respite Network
Center for Parent Information and Resources
American Academy of Pediatrics
Chronic Conditions – HealthyChildren.org
Center for Chronic Illness www.thecenterforchronicillness.org
Chronic Health Problems in Children, Merck Manual
Frequently Asked Questions
Physical health and mental health are always related. Chronic sickness or pain can trigger symptoms of anxiety and/or depression in the individual and their family members. Mental health can also affect our physical health directly. For example, when we feel overwhelmed, sad, upset worried, and/or stressed our mind tends to pay greater attention to physical symptoms of discomfort, which will in turn increase the intensity of these symptoms the more we focus on the pain. It can also impact our motivation to take care of ourselves. It is not uncommon for stress to increase and for children to experience new challenges related to their chronic illness during developmental transitions (e.g., entering kindergarten, puberty, and going to college).
How do families cope with a chronic illness?
- Some families find support through illness groups, camps, advocacy programs or friends, and others keep it more private.
- Some families like to learn as much information as possible, while others may want their medical team to manage their medical information.
- Some families find that incorporating healthy behaviors, such as exercise, eating healthy, and using stress reduction techniques like yoga or meditation help them to manage both stress and symptoms of a chronic illness.
What are some signs that my family is not coping well and may need more support?
- Your child has sadness, anger, or worries that begin to interfere with their ability to go to school, take care of their health, keep healthy relationships with family or friends, or their ability to enjoy things.
- Your child has physical symptoms of stress like changes in sleep, appetite, energy level, or unexplained aches and pains.
- Your child’s grades are slipping, or a teacher or coach expresses concern.
- Your family is arguing more often, and you are not feeling as close.
- Your child and/or family are having difficulties meeting your health goals like following your medical plan or making it to appointments.
When should I seek professional help?
- A family member is having mood or anxiety symptoms almost every day for longer than 2 weeks. Symptoms are not getting better with time or known support and are interfering with their daily routine and well-being. For further information about symptoms of depression and anxiety, please see the following resources: Anxiety and Depression.
- Remember that parents and siblings of youth with chronic illness can also benefit from professional support.
- Don’t wait until symptoms become totally unmanageable. No one is born knowing how to cope when a child has a chronic illness, and it is ok to need outside support.
- If you or a family member experiences thoughts of self-harm or harming others, contact 911 or a crisis line or go to the nearest emergency room.
At CHOC, we specialize in providing a full continuum of pediatric mental healthcare, including inpatient, intensive outpatient and outpatient program services.
Tips for Parents and Caregivers
Parenting a child with a chronic illness can be challenging for the whole family. Feelings of worry, sadness, and anger are often paired with frequent medical appointments, invasive medical procedures, and daily medical-related cares (e.g., medication, breathing treatments); all of which can disrupt family routines and lead to greater conflicts between family members. Caregivers are often pulled to let certain behaviors and emotional outbursts slide. However, children do best with structure, consistency, and predictability. Children often look to their parents to know how to feel and behave, which provides parents and caregivers an opportunity to model effective and healthy coping to their children.
Don’t be afraid to talk about the diagnosis or related treatments
Children need to process what happened and figure out how it fits into their life as they grow up.
Children understand and process information about their condition in different ways depending on their age. As children grow older, it is important to reassess their understanding of their diagnosis and answer any questions they have in simple, clear terms.
Toddlers and preschoolers require simple, clear explanations (e.g., “You need to take your medicine to stay healthy and strong”). For children in kindergarten and early school age, it can be helpful to use picture books, dolls, and stuffed animals to explain their condition to them. Starting in pre-adolescence, youth need more specific explanations.
Children sometimes think they developed their condition because they did something wrong or bad. Reassuring your child that they did not cause their diagnosis can be helpful at all ages.
Use tools such as books and websites created for small children to help them understand what is happening.
Listen and validate your child’s concerns and experiences
Let your child lead the conversation. Let your child ease into asking questions about their health or long-term consequences. And it’s ok to say “I don’t know” if you don’t know the answer.
When your child brings up concerns about bullying, listen, validate how they are feeling, let them know how much you appreciate them telling you about it, and that you will talk to other adults involved to try to make it stop. For additional information and helpful tips about bullying, see Bullying.
When your child is feeling burnt out from their chronic illness, listen to their concerns, validate their feelings, and provide support.
Help your child cope
Children’s thoughts and feelings about their chronic illnesses change over time. You can help your child cope by listening, providing distraction through highly enjoyable activities, getting active, and encouraging social interactions with friends and family.
Rehearsing and practicing either verbally (e.g., creating a story about the diagnosis and related medical treatments and cares) and/or behaviorally (e.g., visiting the medical office or hospital days or weeks before the scheduled appointment) can help children cope with new situations that seem scary and overwhelming.
It’s okay to let children see that you are sad or upset
In fact, it is a great opportunity to model for them how to express emotions and lets them know that they can talk about negative feelings, too. Expressing emotions also allows a great opportunity to model coping skills and self-care.
We often have no adequate explanations for why a particular child has a chronic illness, but their sibling or peers do not. Just make sure they know it is not anyone’s fault and that they did not do anything to make it happen.
Keep a routine going for your child that helps them feel safe
So much about chronic illness is unpredictable, having a routine helps make a child feel like they know what to expect, at least sometimes. Making sure your child wakes up, goes to bed, and eats meals at regular times each day can help create consistency and predictability in your child’s daily routine.
Establish appropriate limits, expectations, and consequences
Children behave best with clear expectations (e.g., “If you put your toys away, then you may watch TV”) and firm limits (e.g., “You may not watch TV because you did not put your toys away”).
Children learn how to control their emotions and behaviors appropriately and effectively when they receive consistent parenting and discipline. This has the best results when there is consistency between a child’s parents and caregivers.
Provide frequent praise and encouragement for all desired behaviors, including medical-related cares (e.g., “Awesome job remembering to take your medicine this morning”) and daily routine activities (e.g., “Great job cleaning up your room today”).
Allow your child to have a say in their care, when reasonable
Parents can provide their children a sense of control by offering as much choice as possible (e.g., choosing which arm to receive a poke, picking the music in the car on the way to doctor’s appointments, encouraging adolescents to talk more, and making their opinions known in their medical visits).
Although children and teens may be independent in many aspects of their daily life, it is typically recommended for parents to be primarily responsible for their child’s related medical cares (e.g., medication, making doctor’s appointments). This can help prevent burnout and prevent feelings of shame if their condition gets worse or more difficult to manage, particularly during the teenage years.
Team up against the illness instead of each other
If a child feels that their parents are upset about their lab values or health behaviors, they may not be honest about what is difficult for them in managing their illness. Find ways to collaborate and tackle the demands of the illness together.
Participating in medical-related activities often causes stress for both children and parents, which may lead to a desire to skip appointments or miss dosages of medication. It is important to model to your child how to prioritize their health by regularly attending doctor appointments, taking medication as prescribed by doctors, and completing necessary treatments.
Take care of yourself
To be there and care for your child, you also need to take care of yourself. Eating a healthy diet, maintaining a consistent sleep schedule, engaging in regular exercise, and seeking support and help from friends and family members are some ways parents can engage in self-care. Engaging in self-care helps you parent more effectively by improving your physical and emotional well-being as well as showing your child how to use healthy and effective coping strategies.
Set up additional support
Letting the school know what is happening may help provide additional support for your child and your parent. If there are medical cares that need to happen during the school day, the school nurse may be able to help with administering medication to make sure your child has a quiet space to go to when they need to administer care. Schools may also be able to provide additional support to your child through doctor’s notes and 504 plans.
Tips for Children and Teens
Living with a chronic illness can be overwhelming and feel like a full-time job. Coping with a chronic condition also can bring about feelings of sadness, fear, worry, and anger. Individuals with a chronic illness are at a higher risk for experiencing symptoms of depression and anxiety. However, these symptoms are treatable. There are many strategies to improve your emotional and physical well-being so you can better cope with your chronic condition.
Knowledge is power
The more you know about your condition, you will be better prepared and equipped to understand what’s happening and why.
At first, you may feel like your illness is controlling you. However, the more you learn about your diagnosis and how to manage it, you will feel more normal and in control.
Ask medical team and parents questions about your diagnosis, medications, and treatments. If you want to explore information online, ask your doctor for trustworthy and reliable websites, online resources, and even social media accounts you can follow.
Build and maintain supportive relationships with others
Having support from family and/or friends can be very helpful when coping with a chronic illness. Support from others helps reduce feelings of loneliness, sadness, worry, fear, pain, and stress, as well as improve overall well-being and ability to engage in daily life activities.
Spending time with friends is another way to feel more “normal” when managing a chronic illness. If seeing people in person isn’t possible (e.g., in the hospital, disease flare up), children and teens will FaceTime or Zoom with their friends and family members.
Ask for help when you need it
Coping with a chronic illness takes a lot of energy every day. There will be some days that are better than others. Having “off” or “not so good” days are a normal part of life, but when you are managing a chronic illness, these days may seem especially challenging. Our feelings and emotions tell us what we need, including when we need additional support and help. On the “not so good” days it can be helpful to let others, such as family and friends, know when you are having an “off” day and how they can best support you.
Support can look different for each person and can vary depending on the situation. Some people need others to be a supportive listener, provide distraction, help solve problems, give physical support (e.g., hugs, company), offer encouragement, or a combination of these things.
“Burn out” can happen when managing a chronic illness and it can be helpful to let your family and friends know when you are having “burn out” and how they can help. For example, you might want more reminders to take your medication or having someone to doing something fun and enjoyable with you (e.g., playing a game) after completing your medical related cares (e.g., medication, treatments).
Create a list of coping strategies
Unpleasant feelings (e.g., stress, worry, overwhelmed, sadness, anger) can make it harder for you to care for your chronic condition. Finding strategies and ways to decrease these unpleasant feelings can make your chronic illness feel more manageable and tolerable.
Ideas of healthy and effective ways to cope with unpleasant thoughts and feelings include going for a walk, listening to music, reading a book, watching a movie, playing a game, doing arts and crafts, spending time with friends and family, thinking of your favorite place (or memory). For additional ideas of coping strategies, see Mental Health Video Library.
Talk with others who have a chronic illness
Sometimes people feel isolated and alone when battling a chronic illness. It can be helpful to talk with others who are also coping with a chronic condition. This could be through support groups or being connected through a mutual acquaintance.
If you are interested in a support group, your medical doctor may have some recommendations or know of a support group for you to join. Ideally, it would be most helpful if you are able to talk with others who have a similar type of chronic condition as you do.
Create a daily routine
Having a daily schedule can be helpful to remember what needs to get done and to stay on task. Many children and teens use a visual schedule or daily planner and then “check off” each task after completing it. This can help you feel more accomplished.
Participating in your daily routine is helpful for your physical, emotional, and mental well-being. Incorporating physical exercise (e.g., going for a walk, yoga, stretching) into your daily routine can improve mood, sleep, energy, and motivation.
It’s important to make time for things that are fun and matter to you during your daily routine. Prioritizing fun and relaxation time along with medical cares, chores and homework can help keep you balanced and motivated and fight against burn out.
Set daily goals for yourself
Setting 1 to 2 daily goals can increase confidence and feelings of success. Our daily goals are something you would like to achieve by the end of the day. A goal is anything we actively direct our efforts toward and can be as ambitious as you want.
Daily goals can be part of a larger, long-term goal or they can be an activity you want to do each day in order to develop healthier habits (e.g., physical exercise, mediation, reading).
Daily goals require effort, hard work, and determination. In order to set yourself up for success, your goals should be SMART – Specific (clearly identify a goal), Measurable (make sure you can track your progress towards achieving the goal), Achievable (goals should be reasonable and realistic), Relevant (goal should be important to you), Time-Bound (goal needs to have a deadline – specify time frame when you will achieve the goal. Here’s an evidence-based formula for goal-setting.
For ideas and examples of SMART daily goals for children and teens, see 15 SMART Goals Examples for Kids in 2023 (developgoodhabits.com).
Distinguish yourself from your illness
Language is our primary way of communicating information to others and ourselves. Even subtle language has the power to invoke empowerment vs. guilt/shame in a person. Empowered individuals are more likely to make healthy lifestyle choices and commit to behavior change.
Distinguishing yourself from your illness by how you think and talk about yourself is a healthy and effective strategy to address unhelpful or unpleasant thoughts and feelings. For example, instead of thinking “I am a sick person” you can think “I am a person with a condition”.
Another evidence-based way to distinguish yourself from your illness is by identifying and focusing on your personal strengths and abilities. Personal strengths can be internal (e.g., optimism, hope, self‐esteem), external (e.g., supportive family and friends, trustworthy and supportive medical team providers, neighborhood community), and self-management (e.g., being active, planning and prioritizing, reducing stress, goal setting, seeking knowledge and help).
At CHOC, we specialize in providing a full continuum of pediatric mental healthcare, including inpatient, intensive outpatient and outpatient program services.
Chronic Illness recommended reading
Youth with chronic illnesses can experience additional stressors, complications, and challenges daily above and beyond their medical diagnoses, such as anxiety, depression, grief, and bullying. For more information on different challenges that co-occur with a chronic illness, please visit our other mental health guides.
Books on coping with chronic illness
- Verbal First Aid, Help your kids heal from fear and pain — and come out strong, Judith Simon Prager, PhD, and Judith Acosta, LISW, CHT
- When your child hurts, Rachel Coakley, PhD
- When your child has a chronic medical illness: A guide for the parenting journey, Frank J. Sileo, PhD, and Carol S. Potter, MFT
- Wonder, RJ Palacio
- Digging Deep, a journal for young people facing health challenges, Rose Offner, MFA & Sheri Brisson, MA
Webinars and Videos
The guidance on this page has been clinically reviewed by CHOC pediatric experts.
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