Coping with Chronic Illness

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. 

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.