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!