Research and inquiry suggest a gap in care for people who experience epilepsy. Support for epilepsy patients typically includes referrals to neurologists, psychiatrists, and neuropsychologists alone. Unfortunately, the mental health community has historically deferred their potential role in illness recovery to these specialists rather than joining them as an additional pillar of support. As a result, those with epilepsy may be a group of people overlooked by the mental health community.

But there is more to offer these patients, and it is essential to try and address this gap in care. Psychotherapy theory and practice can indeed provide additional support to those with epilepsy. We can work to contribute to a greater understanding of the lived experience of epilepsy and epilepsy treatment. The overall journey one takes to understand the range of meanings such a diagnosis may have on one’s general well-being and sense of self.

There is no question about “either/or” — epilepsy benefits from attention from multiple streams of healthcare.

The primary framework leverages a neurological/biological lens to help explain the cause of seizures, what differentiates one type of epilepsy from another, and how different sub-branches of the biological sciences can help us identify and treat epilepsy. This framework is emergent and continues to evolve as other technologies and tools allow researchers access to different dimensions of the brain and neural activity. This has facilitated medication management and, in some cases, surgery to successfully reduce seizure activity and improve people’s quality of life. In addition, it provides the crucial first pieces of education for patients and their loved ones to better understand the scope of impact.

While the role of biomedical intervention is necessary, it is often insufficient. For example, no other discipline can replace the need for effective diagnosis and medical intervention on the primary symptom of epilepsy: seizures. But we are mistaken when we believe that that primary symptom captures the entire illness: instead, what the research tells us, and everyone with epilepsy knows, is that there are a host of secondary symptoms, problems, and distressing realities in addition to the seizures themselves.

A thorough approach to health care is needed, not only for the primary symptom but also for the entire gamut of challenges. But what are those challenges, and what can be done to help?

Consider how the following might benefit those experiencing epilepsy:

● Understanding ourselves and our relationships is about more than simply coping – Creating a new sense of meaning and exploring a broader understanding of ourselves. We may confront rugged terrains, such as anxiety, stigma, loss, and fears regarding our limitations. Thoughts, moods, efforts, and emotions impact our capacity for action and choice.

● Agency – Epilepsy suspends our previous perceptions of living out our lives in an otherwise stable, dependable, and “handled” world. It requires re-orienting to a new position within the world, which can be difficult. Counselling therapy is a place to craft ways to engage with these questions proactively.

● Freedom – Our lives are broadly defined by our choices; epilepsy re-frames what it means to choose how we are with ourselves, others, and the world. Experiencing epilepsy means “living into” the sense that our brains sometimes act independently, which radically limits our understanding of our freedom to choose. This can be difficult to cope with and often results in sadness, grief, isolation, and sometimes more immense feelings of meaninglessness and hopelessness. These feelings are at the core of our human experience, repeatedly painfully emphasized because of epilepsy but aided through participation in the counselling therapy process.

● Being at home in the world and one’s body – Our lives can become defined by vulnerability, uneasiness, and things not making sense as they once did. Epilepsy alters our taken-for-granted way of being, and the seamless fabric of life’s meaning is undermined. Items can be marked by fragility and perhaps a sense of not feeling at home in one’s body and world. It can also make one susceptible to disruption and disorganization that seizures can elicit. This can be traumatic and difficult to cope with. Stigma, isolation, loneliness, and quality of life concerns reside within this territory.

 ● Time – Our life’s purpose and meaning are defined by time. Epilepsy forces one to confront complex life, meaning, and death concepts. Encountering the traumatic elements inherent to these concerns is profound. Epilepsy is marked by the experience of unpredictability, fragility, and angst. Many people with epilepsy find themselves saying, “I just don’t know,” in response to questions about how their illness may impact their lives over extended periods. This type of traumatic opening up to uncertainty can be engaged with carefully in counselling therapy.

● Relationships – Our relationships give meaning to our lives. Unfortunately, this makes them vulnerable to the impact of epilepsy as well. This impact can be challenging to decipher, let alone speak about and manage. Loved ones grapple with the effects of epilepsy on them and us as they relate to us and hope to support us. Counselling therapy can help construct positive ways to engage in these questions and assist loved ones who may be grappling with how best to integrate the impact of epilepsy into their lives as well.

Each journey is different. However, clinical research and experience guide our approach and our goals. Some of these goals for treatment include:

● Familiarity – A felt sense of having got to know the self and body through the transition that diagnosis always represents.

● Openness – Through collaborative and deliberate dialogue, clients gain comfort and transparency about their life experiences, which leads to less shame, stigma, and loneliness, replaced by openness, understanding, connectivity, and even pride.

● Clarity – Clients can become more apparent after proactively addressing illness’s doubt and uncertainty.

● Relational Security – Clients can increase their feeling of security in relationships by coming to terms with how their roles may be changing and the fears that may elicit, as well as how they can continue to contribute in meaningful ways to their own life and that of their loved ones, and remain in belonging with their loved ones.

● Comfort – Having a partner in navigating the full spectrum of the illness experience can alleviate the burdens of navigating the illness and symptoms alone, testing and medicine, etc.

At the heart of what it means to cope with and live with epilepsy is to find the space to explore these questions, concerns, and challenges and develop a new way of understanding ourselves. This means building upon the biological and neurological explanations of the epilepsy experience to engage directly with what it means, for you, to live with your epilepsy.

We invite those experiencing epilepsy or PNES to work alongside us to explore an active, free, spontaneous, and curious form of engaged understanding of oneself and one’s diagnosis.