Family Issues

    Epilepsy is almost always a trying disorder for a family. Family reactions to epilepsy range from guilt, dismay, and embarrassment at one extreme with few families regarding seizures as a routine matter. Be sure to contact us if you are feeling alone, confused, overwhelmed, or lost. We provide you with an initial consultation to identify support services, information, and referrals if need be.

    Many patients withdraw from social interactions and normal age-related activities such as sports and hobbies in spite of the fact that some persons with epilepsy involved in absorbing interests have fewer seizures. If your seizures are infrequent or well controlled, side effects of medication are minimal and well tolerated, and this could result is low self-esteem and withdrawal for the patient and family. Unaffected members of the family are vulnerable to these problems. 

    Again, it is important to seek help for depression and receive support. The support groups available in the Fraser Valley offer an essential variety of coping strategies, including peer support, and windows for various degrees of counseling.

    Many problems can be solved by encouraging patients to ask questions about their thoughts and ideas. Reassurance, continuing education and useful advice can go a long way while still being realistic for both patients and for those in contact with them. If you find it difficult coping contact us for further information support sources. 

Issues Faced as Families Living with Epilepsy

    Many families and individuals living with epilepsy have experienced or live daily with all or some of issues identified below. Not all issues affect every family, child, teen or adult. The issues listed below have been identified by parents, children, teens, and adults who live with epilepsy and are members of The Fraser Valley Epilepsy Society. It is our goal to provide support to anyone challenge by one or all of the following issues:

Parental Issues

1. Anger relating to diagnosis of Epilepsy and to each seizure.

2. Medical emergencies recognizing them, knowing procedures. Effects on the child.

3. Extreme stress even resulting in marriage breakdown.

4. Depression.

5. Individual breakdown of either parent.

6. Appropriate seizure management.

7. Extensive need for education about seizures. Correct identification of seizures is important many people/children have more than one type of seizure that may require more than one type of AED drug.

8. Overwhelming feelings of hopelessness, isolation fear and concern (magnified when seizure control is not obtained or the child has intractable epilepsy).

9. Inability to control or plan family life (resulting from poor or lack of seizure control)

10. Parenting techniques to deal with behavioral issues surrounding their child.

11. Impacts on the child's education.

12. Educational issues, identifying and establishing relative support services within the educational system.

13. Disclosure.

14. Educating and teaching seizure management for anyone involved with his or her child.

15. Coping strategies/Lack of.

16. Exhaustion and "burn out" are all too common without support.

Disclosure

          People with epilepsy often wonder why they can be treated badly or unfairly just because they have Epilepsy. This can be a problem for people with Epilepsy, but one that can change. Understanding and education can change the universal outlook about epilepsy. 

            Most people do not understand epilepsy. People are afraid of things they do not understand. People do not like things they are afraid of and try to avoid things they do not like. However, learning how to explain your condition will help people understand, create a greater awareness, aid in dispelling existing myths about epilepsy and open the doorways to education about epilepsy.

            People with Epilepsy can talk about seizures. Some of the following ideas may help in the disclosure process and best explain the particular type of seizure/seizures.

Write down several things:

   1. What is a seizure (simply, it is an electrical discharge in the brain, usually self limited, that causes different physical effects for different people and seizure types, a loss of consciousness usually, and other effects)?  Explain what happens in the brain, what causes it, and what happens to the body before, during, and after.

   2. What does a seizure look like?

Identify the way your seizure displays itself. -A person usually does not know what is happening during a seizure, has no control over what happens, and that you cannot stop a seizure.

   3. How can someone help a person having a seizure?

Explain what to do during a seizure, how to tell when it is over, and how to help after a seizure. Also, mention whether a person knows they are going to have a seizure, and how to react when they tell someone. 

   4. How does epilepsy affect a person when they are not having a seizure?

Explain how people with epilepsy are very normal most of the time, including the degree of post seizure impairment, physical or cognitive challenges, and side effects of medication. 

   5. Finally, how is someone not affected by seizures? Think about some of the “stigmas” that people with epilepsy are faced with, and find a way to present yourself well, not as an epileptic (epilepsy being most important), but as a complete person, with epilepsy being one of many parts of your life.

            Seizures can be frightening events for anyone, with better education, support, will assist in disclosure/seizures becoming an overwhelming burden for those who experience infrequent seizures and are moderately to well controlled. Explaining seizures to people, being welcome to questions, and helping people understand seizures can help to make life much easier, and support ways to lead a very normal life. If people understand epilepsy, they will not be as shocked or afraid, education is the key to understanding and successful disclosure!

If you would like you support or information and educational materials, or an in-service at your place of work, please contact the Adult Programs Coordinator. We have a wealth of information and educational videos that can be used in your life and or workplace. We are here to support you in the Fraser Valley