Commentary

This survey was simply the first attempt to gather as much information as possible about the issues currently facing people with epilepsy in Canada. All of the issues addressed by the survey will require further study and analysis in future. However, the survey also opened doors to further action by allowing the voices of people with epilepsy to come through. The survey allows us to see that most concerns were not regional; what affects people with epilepsy in one part of the country affects them also in other regions.

The top five areas of concern focus on stigma, ability to drive, affordability of medication, lack of patient education and employment. These issues are so intertwined and interactive that it is difficult to address one area without seeing its impact on all the other areas. As one respondent wrote: “None of the issues are more important than the other. They all represent disenfranchisement or traps that people could get caught in that become difficult to escape.” Inaccurate and inappropriate portrayals or images of people with epilepsy might be thought of as the foundation on which all the other areas of concern are laid. Education, employability, socialization, financial status: all of these are impacted by the public’s perception of people with epilepsy.

The public’s view of anything, including epilepsy, is by nature an awkward negotiation between what may be true and what has gone before, what is generally accepted, what requires the least personal effort to believe. If we want to change the way our society thinks about epilepsy, we must try to understand the forces that hold these beliefs in place, and replace them with equally forceful but opposing beliefs of our own.

Quality of life is an increasingly important component of the evaluation of health and social services, and medical policy. Unfortunately, the medical evaluation of quality of life for people with epilepsy often differs greatly from the person’s own point of view. The physician may ask, “Are your seizures under control?” We must endeavour to ask about these deeper issues that have a deeper effect on quality of life: education, employment, freedom to drive, socialization, and the ability to achieve one’s dreams.