Parent’s Perspective

When your child is living with a chronic disease, it is natural to feel a mixture of emotions at different times. You should give yourself time to accept the situation and find the best way to cope with your feelings.

Some common feelings faced by families with children with a chronic disease include:

Fear

You may be afraid of what may happen next, especially if you think that your child's condition may get worse. You may fear that you will not be able to handle an emergency or that your child may actually die.

Anxiety

You may feel a tremendous amount of anxiety about the unpredictability of the disease and whether a cure will ever be found. You also may be anxious about the high cost of medical care that your child requires.

Sadness

You may grieve for what is lost – a carefree family life and good health for your child. As your child gets older, you may feel depressed that your child cannot engage in certain activities or he/she encounters certain social issues related to their disease.

Anger

You may feel angry at life’s unfairness and how cardiomyopathy has affected your family. You may also feel frustrated when the disease does not respond to treatment or the condition progresses.

Guilt

You may feel guilty for passing on the disease to your child or not having the disease diagnosed sooner. When your child encounters medical or social problems, you may feel guilty for not being able to do more.

Understandably, the fear and anxiety of dealing with a chronic disease in someone you love can be challenging. Remember that these feelings are normal and natural, and that you are not alone.

Child's Perspective

 

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