Coping With Your Child's Chronic Illness

When you have a child who has been diagnosed with a chronic illness it can feel like your family has been hit by a tornado.  From the initial moment of finding out your child has a chronic illness and throughout the process of learning about the condition and figuring out how to cope, parents go through various stages of emotions.  There are so many factors that impact the parents and child as they work together to get through the emotions and stages of grief (shock & denial, pain & guilt, anger & bargaining, depression & reflection, the upward turn, reconstruction & working through and acceptance & hope).  Some parents have a difficult time wrapping their heads around what they should do next? 

The first step is to become knowledgeable about your child's chronic illness:

  • Knowledge is Power: the first step to coping with your child's chronic illness is to become educated about the chronic condition.  The unknown can create fear, anxiety, sadness, loss of control and helplessness.  Knowledge is empowering!  Becoming educated can help you and your child feel more in control of the condition and enable the parent to advocate for their child.  

Once educated about your child's chronic illness, parent's need to be able to:

  • Advocate for your child: as a parent you are your child's voice at the doctor's office, hospital, school and with family and friends.  For example, if you are uncomfortable with your doctor putting an IV in your child's head, then step up and say "no."  At the end of the day, you know your child best and you are in control of the situation.  Don't let anyone make you feel like you are a bad parent because you are standing up for your child. 
  • Develop relationships with your child's health care team: ask your child's health care team as many questions about the chronic illness as you can.  You are a parent, not a doctor so you still need time to become the expert of your child's condition.  As your child develops additional questions will arise.  By developing a relationship with professionals you will feel more comfortable asking questions about your child's condition and you will also feel more at ease knowing you have someone you can call and count on.  Please note: if your child's health care team is not responsive or helpful in educating you about your child's condition keep looking until you find a professional that fits your families needs.  You do have options!  
  • Join support groups: gaining support from others going through similar experiences can be liberating.  At first you may feel alone and that no one understands what you are going through  because they do not have a child with a chronic illness.  By gaining support from others, one can become educated first hand by other parents, make you feel like you are not alone and can look at what worked and what did not work for other parents.  There is a list of benefits that support can offer parents.  There are also online groups you can join if there are no support groups in your area or if you prefer the convenance from your home.
  • Attend to your own needs: it can be easy to forget about ourselves when you are caring for a child but it is important to realize that you are human and you can only do so much.  You need to take care of your needs and take the time to exercise, meditate, hang out with friends and family or just do something you enjoy!    Having a family member with a chronic illness can be exhausting and stressful and it is important to do activities (art, music, sports, journaling, exercising) to help relieve your stress.  Learn how you and other family members can best cope with stress.
  • Accept Support: chronic illness can have an emotional impact on the entire family depending on the type of condition.  It may be challenging for you to be able to support each family member when trying to learn how to cope with your own anxiety, sadness and grief.  It is important to understand that you do not have to do this alone.  Reach out to other family members, friends, and support groups for help.  Whether it is asking a friend to drive another child to practice or asking a support group member to just listen to how you are feeling.  Asking for help does not mean you are weak, it shows how strong you are to be able to reach out and ask for assistance. 

"Challenges are what make life interesting; overcoming them is what makes life meaningful."
       -Joshua J. Marine

Don't forget you are strong and can get through anything! 

Helping Your Child Cope With Chronic Illness

Not only do the parents need to learn how to cope with their child's chronic illness and provide unconditional love and support, but also they need to help their child cope with their condition.  Children with chronic illnesses often deal with more stress than other children.  Children with a chronic illness have to cope with "why" they have a condition, how come other children don't have what they have and why do they have to get painful injections, surgery, chemotherapy, etc.  Unfortunately, there are no simple ways to help your child avoid the stresses they experience when having a chronic illness but there are some ways parents can make the situation a little easier on their children.

  • Listen: whether your child has a chronic condition or not, it is always important to always listen to your child.  What feelings is your child experiencing.  Does he/she feel sad, frustrated, angry or hopeless because they have a chronic illness?  It is valuable for a child to have an understanding that they can talk to their parents about how they feel and have their feelings validated.  
    • Ask how your child is feeling?  How was your day?
    • Explore their feelings...
    • Ask questions...
  • Don't be afraid to talk: it is important to encourage open communication with your child regardless if you child has a chronic illness or not.  Having open communication with your child is key and will lay the foundation for their adolescent and adult years.  By not talking about  your child's chronic illness, you are creating ineffective communication patterns and masking feelings that need to be shared and explored.  Both you and your child are going through a very challenging experience and it is important for you to collaborate and work as a team.  By working as a team you will develop a strong parent and child relationship.
  • Educate your child about their chronic condition: your child needs to know what their condition is all about.  If you think about how you felt as a parent when you were uneducated about your child's chronic illness, you know how the unknown can provoke anxiety, fear, sadness, and feelings of helplessness.  The same goes for your child.  If they don't know what their condition is, they will have very similar feelings.  The more you and your child know about the condition, the more empowered and in control you will feel.   
    • If your child is young, I would recommend researching children's books that can help explain their condition in an age appropriate manner.  These books can also be helpful during your child's school years so he/she can share the books with their classmates and teachers.  
    • Prepare your child for medical procedures so they know what lies ahead.  Learn ways you can help your child be distracted during procedures (i.e. sing songs, read books, use toys).  Distraction can be very helpful and alleviate some of your child's anxiety and fear.
  • Encourage your child to spend time with to other children with a chronic illness: your child may feel alone if they don't know anyone else with their chronic condition.  By spending time with other children with a chronic illness, they can learn from them and gain a sense of comfort in knowing that other children are going through similar experiences.  If you think about how alone you may have felt when you found out your child had a chronic condition, you can begin to understand how your child may feel when they are at school and there is no one else at school that has that condition.  They may feel isolated and uncertain and it is always positive to connect with others.
  • Emphasize your child's strengths and boost their self-esteem: it is always important to express all of the wonderful strengths your child has.  The goal is to boost your child's self-esteem and ultimately increase their confidence.  Don't be afraid to let your child know how wonderful they really are!
    • What great qualities does your child possess?
    • Communicate to your child: "You did great at your baseball game today or way to get an "A" on your test."
  • Help your child lead as normal a life as possible: just like you would do with any child, give provide your children with choices and responsibilities and don't forget to set rules, boundaries, limitations with both rewards and discipline.  Just because your child has a chronic illness does not mean they are off the hook and can do whatever they want.  Children strive on rules, boundaries and limitations, which contribute to their learning and development.  
    • Maintain family routines and traditions as much as possible.  Children also strive on consistency and routine.  When your child has a chronic illness, maintaining routine can be challenging, but the goal is to do the best you can.

Helping your child cope with their chronic illness can be challenging as a parent.  Most parent's wish they could wave a magic wand and their child's chronic illness would vanish and your child would not have to deal with the additional stress and challenge.  However, this is just not the case.  As a parent you are your child's role model.  So once you can accept that your child has a chronic condition, the sooner your can help your child cope with their feelings and accept it.  The goal is to work together as a family and overcome challenges together.  Remember, you are only human and can only do so much, but you do the best you can and that is what is important!