LIVING WITH EPILEPSY
Life with epilepsy
Epilepsy can develop at any age. Some people are diagnosed with epilepsy at a very young age and their adjustment to the condition begins in childhood. For others epilepsy may be an unexpected diagnosis later in life, such as during adolescence, adulthood or senior years.
Nevertheless, whenever epilepsy develops, it can present a range of challenges across many aspects of life that can take some adjustment, but need to be managed.
Diagnosis
People often experience a broad range of emotions and responses to the diagnosis of epilepsy, including fear, anger, disbelief, sadness and sometimes relief. Each person’s response to diagnosis varies as a result of a range of things, including the circumstances surrounding the diagnosis and their understanding of epilepsy. For example, some people with limited memory of their seizures may have difficulties believing or accepting their diagnosis, while others who have experienced unusual events and lapses in time for a while, may feel relieved to have a diagnosis and understand what is happening.
Importantly, early on, most people have limited understanding of epilepsy, what it means and how it is managed. Thus, receiving a new diagnosis can, understandably, be a time of uncertainty for many people as they try to understand what their diagnosis means for them.
It is normal to have a lot of questions when first diagnosed with epilepsy. Questions about the frequency and consequences of seizures, seizure control, and effects and side effects of medications are common. Similarly, concerns are also common about the impact of epilepsy on the different areas of life, including relationships, independence, support, childbearing, employment, ability to drive and participate in day-to-day activities, such as sports.
The answers to these questions are not always straightforward and will differ for everyone. However, many people find that, when they learn about epilepsy and work collaboratively with health professionals, they can get answers to these questions and maintain a good quality of life.
Don’t be afraid to take a list of questions to your doctor as it is important to understand your type of epilepsy to help you better manage it. Have a look at our You and Your Doctor Factsheet.
Epilepsy is more than seizures
Epilepsy is defined by the tendency to have recurrent seizures, but can be so much more and can impact a very wide range of areas including cognitive function, mental health, and social adjustment. Possibly the least understood and most neglected aspects of epilepsy are the social, psychological, and behavioural problems that can occur (Hermann & Jacoby 2009)
Adjusting to a new diagnosis of epilepsy can be challenging and can require patience, resilience and often lifestyle changes. Most importantly, despite the challenges, people with epilepsy can lead a fulfilling life.
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