“After having a successful temporal lobectomy, I woke up to a world I did not recognize”. This is a quote of Sarah’s, describing one of her incredible pieces (“Blind”), that very much stuck with me. Working as a Clinical Neuropsychologist in Australia, I support people who are undergoing epilepsy surgery by providing cognitive and psychosocial education and support in the lead up to surgery and for many months afterwards. I have been struck by reports of people feeling like a “completely different person” after a successful operation. 

 This idea of experiencing a major shift in identity following successful epilepsy surgery is not new but is not yet as well recognized as it should be. In the 90s, researchers from Australia interviewed a large group of people who had undergone epilepsy surgery about their experiences. The researchers noticed a number of common themes in the difficulties that people were facing. Central to these difficulties was a change in sense of self - transitioning from being someone who has been chronically ill with epilepsy to all-of-a-sudden being someone who is well. They termed this process “the burden of normality” (S. J. Wilson et al., 2007; Wilson, 2001).

Every experience of the burden of normality is unique to the individual. This may encompass feeling a sense of pressure to make up for time “lost” to their epilepsy, prompting a flurry of overactivity. Some of these changes in the individual can also result in shifting relationship dynamics as the person who has undergone surgery seeks to explore their newfound independence and autonomy, causing tension with family members who are not used to these changes yet. Alternatively, some may have a desire to hold on to the familiar sick role and avoid taking on new responsibilities, which can prompt a different type of shifting dynamics if family members apply increasing pressure to get back to “normal life” before the person feels fully equipped to do so. Some of these experiences can then be accompanied by mood changes, including depression and anxiety in the early stages of recovery. Many who embrace this process of identity change report improved wellbeing and quality of life over the longer-term.

The burden of normality really underscores the importance of patient-centered care and understanding the broader psychosocial impact of living with a chronic health condition such as epilepsy, and therefore the potential for major treatment interventions (such as surgery) to affect someone’s psychosocial situation. Providing support and opportunities to process the burden of normality, such as through art therapy, is critical to fostering good outcomes and improve people’s capacity to make the most of being seizure free. 

• Dr. Honor Coleman, BSc (Hons), MPsych, PhD