Most parents describe the point of diagnosis as a critical time. Every parent is different, but parents commonly go through a process of adjustment to the diagnosis. This process of adjustment often resembles a grieving process.
Grieving is a natural response to a significant loss. The loss associated with a diagnosis of epilepsy centres around the loss of a parent’s hopes and wishes for a healthy child. The emotions that parents feel when a diagnosis is confirmed are a normal part of the healing process. There is no right or wrong way to feel. You cannot make yourself stop feeling what you are feeling. Trying to stop those feelings or burying them can be very unhelpful and harmful. What is important is to have a healthy way of dealing with your feelings.
Parents commonly feel shocked, sad, angry, guilty, confused and scared. Parents may feel that a mistake has been made in the diagnosis or they may deny the diagnosis completely. They may blame themselves – this is especially true if there is an underlying genetic explanation for the child’s condition. Parents’ responses can be affected by the way the epilepsy affects their lives – for instance, the severity of the epilepsy and extent of disability, the effect on family and social life, impact on work and financial security, and so forth. Generally, the greater the impact of the epilepsy, real or perceived, the more complex the emotional response. Again, there is no right or wrong way to feel.
Diagnosis may raise many questions for the parents.
- What does the diagnosis mean?
- What are the implications for the child and the family?
- Who do you tell about the diagnosis?
- What do you tell?
- How do you explain the diagnosis to the child and when?
- How to support the child in his/her adjustment to the diagnosis?
- What to say to siblings? And how to support them?
- Who can provide assistance?
Diagnosis can be a difficult, confusing and frightening time where there can be more questions than answers. It can be a point of dread for families but it may also bring some relief. Diagnosis can provide some answers. It can eliminate certain conditions and provide direction for treatment and care planning. Slowly, with time, things will settle down and parents will usually find a suitable way of managing their circumstances, and things will start to take on a new ‘normal’.
Epilepsy Action has an information booklet for carers whose child has been recently diagnosed with Epilepsy: When your child has epilepsy.
The information provided on this page has been written by members of the PENNSW Website Editorial Committee.
This page was created in March 2012 and last reviewed on October 13th 2014.