Dealing with Family and Friends

Having a diagnosis of epilepsy can strain relationships.  When the diagnosis is new, including family and friends in thoughts and concerns about the seizures, or those of your child, is a decision you will have to make.  Only the patient can know exactly with whom it is comfortable sharing personal information with and whom can be trusted to keep the patient’s confidence.  But, definitely an isolated adult or child can prove to be unhealthy.  No one gains from going through a difficult experience alone.  Consider these important points to discuss with the patient:
1. Volunteering information about your epilepsy can increase your sense of well being by giving you the recognition that you are not alone.
2. Sharing with others allows them to share with you.  While family and friends may not understand what it’s like to receive this diagnosis, their life experience most likely includes similar situations from which they can draw helpful comparisons and useful coping strategies.
3. A new diagnosis can bring with it sadness, frustration and anxiety.  While the cause will not be obvious if you choose not to reveal your epilepsy, it would be difficult to hide the behaviors that are associated with those feelings.  Unknowing family and friends could misinterpret your mood and an unnecessary split in relationships could be the result. 
4. For some people, asking for help is very difficult.  One thing we struggle to maintain is our independence.  Asking for help is not relinquishing freedom.  It’s simply recognizing that everyone has limits to what they are able to do.  Wouldn’t you want to be a help to them?

If you are the caregiver, it is extremely important to recognize your limits.  Epilepsy and its consequences may be a long-standing part of your life.  Neglecting yourself can create negative feelings about your dependent, create health issues for yourself, become isolating, and become overwhelming. Growing to be the best caregiver includes self-care.
Siblings of children with epilepsy often feel neglected, are jealous of the attention the sick child receives, and can become angry about the family life-style changes that often accompany this diagnosis.  Frank conversations with them about the changes they are seeing, creating a “special time” for each, and possibly trying family talk therapy can help to avoid common pitfalls that often occur.
Sheltering grandparents from information about their grandchild’s epilepsy is perceived by many parents to be kind.  But, many grandparents report feeling left out, are fearful of what they don’t understand, and know staggering isolation.  Consider making them a part of your team.