Living with epilepsy

Did you know?

Some epileptics feel the onset of seizures while others do not.

Living with epilepsy is not easy. In addition to its physical consequences, the emotional and social consequences of the disease are burdensome. Sometimes the latter endanger the patient more than the former.

Physical effects of the disease

Unlike some other diseases, epilepsy strongly manifests in the form of a bodily epileptic seizure. Some epileptics feel the onset of seizures while others do not. People with epilepsy, especially those with severe seizures, may feel physically fatigued and severely exhausted as a result of seizure. Headache is quite common, they experience weakness and require longer rest periods. Those who experience seizures in the form of absence (lapses of awareness) do not suffer the intense physical consequences of seizures, but nevertheless experience a disturbing feeling of “the awareness of time being interrupted”, as a time of absent-mindedness. They are unaware of what is happening, what was happening to them and what they were doing. Similar experiences of bodily unawareness are also reported by those who suffer from stronger forms of seizure. Absence seizures only last a short period, usually without any major physical consequences, and are therefore more easily tolerated by epileptics.

People with epilepsy may experience physical injury due to a seizure (bumps, cuts, burns, etc.). Serious injuries are also possible and medical assistance may be required.

Emotional effects of the disease

People with epilepsy often experience various forms of anxiety and fear:fear of the reaction of their environment, of the opinions of other people, fear that the disease might aggravate, fear of motherhood, fear of inheriting the disease, fear of the disease's unpredictability, etc. These forms of fear are also perceived by people who surround epileptics, for example, their relatives. The unpredictability of epileptic seizures is related to an uncertain future, especially in matters that are directly related to the manner in which the condition manifests itself (e.g. driving license, employment, etc.).

Epileptics experience anxiety especially when learning about their illness. They are afraid of the next seizure. Such fear is often also a fundamental reason for mistrust towards other people, especially if they are not yet familiar with the illness. Patients may therefore shut themselves in, acquire a sense of inferiority, and, in extreme cases, socially isolate themselves. One reason for such a state of affairs is that witnesses often do not recognize the bodily manifestations of the condition when a seizure occurs, and are thus alarmed and panicked. People with epilepsy may then respond with additional feelings of discomfort, and their fear of experiencing seizures intensifies.

Social consequences of the disease

The consequences of epilepsy reflect in social contacts and relationships that epileptics have, as well as in their sense of social acceptance and autonomy. The social network of epileptics may start to deteriorate with the onset of illness. However, this is not necessarily the case. The social consequences of the disease are greater for epileptics who have a more severe form of illness and prolonged (physical or mental) consequences. They may encounter a sense of loneliness. They are most frequently faced with non-acceptance of the disease from those who become acquainted with it in combination with prejudice. Social contacts may also be cut due to close family members who accept the disease, but at the same time conceal it. In addition, people with epilepsy often have to cope with excessive care from their relatives. Overcare for a person with epilepsy reduces their sense of ability to take care of themselves and to strengthen their self-esteem. In their desire to help, relatives may deprive the epilepsy patient of autonomy in deciding on key life issues. Although the prejudices surrounding epilepsy have a significant impact on the understanding of epilepsy and also in the integration of people with epilepsy into society, the disease is not always a good reason to reduce social contact. In most cases epileptics do maintain a close circle of people and despite the illness, have developed a social network and a wider circle of friends.

A diagnosis of epilepsy also means that one's ability to work is limited (reduced). Epileptics often report that illness as a reason why employers do not employ them. Nevertheless, this is not a general rule. Despite their illness, people with epilepsy are able to work in a profession they like. Such people do not report of adverse experiences in finding work. When looking for work, they are more aware of their limitations and are more willing to reveal the characteristics of their illness.