Page 475 - ILAE_Lectures_2015

Chapter 50

The patient’s viewpoint

SUSAN USISKIN MBE

National Hospital for Neurology and Neurosurgery, Queen Square, London, and Epilepsy
Society, Chalfont St Peter, Buckinghamshire

Throughout the past century the management of epilepsy has greatly improved, with a wider
choice of treatments aimed at specific types of seizures. The social and psychological
consequences of living with epilepsy have in the past been relatively neglected, both in the
clinical setting and by society in general.

Until relatively recently there was a lack of awareness of how a diagnosis of epilepsy could
affect the patient. Where seizures remain refractory to treatment they may have a disturbing
effect on the patient’s life, inducing an understandable feeling of insecurity, which may affect
self-esteem and confidence. Attacks may be frequent or infrequent, they may also happen in
public, during the daytime, or at night when the patient is alone. Each possibility brings its
own attendant fears.

Uncertainty about when the next attack may occur presents a particular problem. The
patient’s dilemma is living with an ever-present threat, never knowing when the next attack
will happen. To the unaffected however, the person with epilepsy is ‘normal’ between attacks.
These two very different perceptions illustrate the patient’s dilemma, and it is easy to see how
some patients feel isolated and misunderstood, perhaps leading them to live a rather covert
type of existence.

When attacks occur in public a common source of anguish is the response of the onlooker
who may:

 Recoil in horror if ignorant about the condition
 Make fun of the patient, covering their own embarrassment at the situation
 Ignore the patient, turning a ‘blind eye’
 Panic and call an ambulance
 Intervene inappropriately (holding the patient down or introducing a hard object into the

mouth).

The reaction of family and friends is key and family support and encouragement is important
for positive adjustment over time. Epilepsy may affect family equilibrium and may be a
frustrating disorder for everyone. An accurate understanding of the diagnosis is vital in family
adjustment, as is containment of anxiety, if the patient is to have a good chance of learning
to cope. A partner or family may be feeling:

 Grief for the patient
 Fears for their safety
 Doubts about their own ability to cope with the situation
 Resentment  disruption to their own lives
 Guilt  is it their fault?
 Isolation.