Stress and emotions

When a child is diagnosed with chronic illness, it's common for parents to feel guilt, anger and sadness.  You may feel angry toward your partner, the world at large or maybe, at times, toward your child. These feelings are normal, you're not alone.

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Addressing your child's medical condition directly is the best way to move forward. Studies show parents of children with cancer found those parents who took action and focused on the problem experienced lower levels of anxiety and depression than parents who denied or avoided the situation.

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Stress levels can spike when caring for a child with a medical diagnosis. A lack of control may be the most stressful aspect of caregiving — parents can feel a loss of control when, for example, they are unable to help their child feel better, or are uncertain about the future prognosis.

 

Children's whose parents had high stress levels also had poorer management of the disease. It is important to manage your own stress. Building a support network you can rely on to help ease your load. Also make time to take care of yourself, both physically and mentally. Eating well, exercising and staying connected to hobbies or other interests can help keep stress in check. Don't feel guilty to take some time for your own mental health. In the long run, doing so will help both you and your child.

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Relating to your child

It's natural for parents become protective, you want to hold on with every ounce of strength you have. Try to remember, life is about creating memories, and to continue to do so through these tough times. It's also natural to want to allow your child to do things you didn't allow for before, for example, staying up late,  or to have candy/snacks. But children crave structure, and may become scared or confused if when we shift those health boundaries too much. It's an important balance to allow for some shifts to enjoy life and also to maintain structure.

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It can be daunting with how to speak to a child about his or her illness. It's important to share information based on their age. It's also important to speak with a child immediately. If a child overhears a doctor, health care provider or family member, and doesn't understand what's happening, he or she may begin to imagine the worst.

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What may be the most impactful thing you can do as a parent -

guiding and nurturing your child's emotional health. Open the doors for conversation, often, parents are surprised by which aspects of an illness are most difficult for a child.

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If you have other children, it's important to make some one-on-one time with them too, so they know they're still important. Make them part of the team; help them figure out how they can be involved in caring for their brother or sister.

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How People React to Your Child's Diagnosis

Dealing with the emotions and beliefs of other people about your child's diagnosis can also be challenging. For example, those closest to you might worry about the idea of loss. They may be concerned about how the changes in your life might affect them. It can be hard to deal with the fears of others while you are facing your own.

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Sometimes people are not sure what to say when they learn of the diagnosis. Even as they try to offer support, some might say or do things that hurt your feelings or offend you. Some people are uncomfortable thinking about the possibility of cancer in their own lives. Because of their own fears, they may not know the best way to help you with your illness.

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People can also pass on incorrect information, false beliefs and myths about the prognosis. For example, although we don’t yet know what causes most types of cancers, people might try to tell you a reason for your cancer. They might give their opinion about the best cure for cancer. Their ideas and beliefs could be different from your own.

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If this happens, speak up and let them know that you appreciate their concern. However, feel free to tell them if they aren't helping you. If the comments of others concern you, talk with someone you trust about what has been said. Discuss any medical advice with your health care team.

 

Criticism

A diagnosis may lead to criticized about the way you parent. Not doing enough, ignoring the facts or signs - these are just a few of the things that may be said directly to our you, but mostly to other family members or friends.

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Some of these critics might surprise you. They can range from family and friends to complete strangers. Once your child starts school your critics can become support staff and other parents.These criticisms hurt. They tend to make you question yourself.

 

What people do not see are things are beyond are power or control. They do not see the time you spend searching for different therapies and strategies to help your child — which then turns into hours on the phone with insurance companies. They don’t see the time you spend helping your child master a new skill. There are also the hours of meetings, phone calls and emails with therapists, teachers and support staff at school...

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I believe the best thing we can do for our children is be their parent and advocate.

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You need to know what a great job you are doing as both. It’s not easy, but every day you get up and do it all over again. As a parent, we spend the most time with our children so we are the experts on what works best for them. You don’t need to explain yourselves to every person we meet. The love we have for our children is fierce and we go above and beyond to help them thrive. If your critics can’t see that, it’s their loss...breathe a sense of relief that all of your efforts matter to your family.