Developing resilience in the face of epilepsy

Since my diagnosis as a teenager, epilepsy has been and continues to be a huge part of my life. However, my relationship with the condition has changed over the years. I used to have an inner shame, that was camouflaged by the fact that unless I was having a seizure nobody needed to know. People tend to assume that disabilities are often apparent, so not disclosing it meant I could be part of a collective norm that allowed me to feel more accepted. I didn't feel so 'Other'. But the reality of my inner world and the true facts about the condition were very different. 

Achieving a point of 'OKness' with my disability has required making a contract with myself to 'work out', accept, and eventually embrace a disability that impacts most, if not all aspects of my life. I have confronted numerous practical, emotional and existential hurdles. I have experienced emotions of discomfort and overwhelm. Ultimately, I've had to acquire a range of tools to help with an assortment of internal and external struggles. 

At an intrapsychic level I have been required to work with a personal script that in the past contained countless discounts of my disability, one that painted epilepsy as an undesirable 'difference'. Fostering a helpful level of resilience has been fundamental in managing this debilitating condition. 

Publicly, I have been at the receiving end of unhelpful discourses that have both minimised and misunderstood my disability, resulting in general feelings of 'less than'. My process of growth and healing has necessitated the challenging of prevailing assumptions about epilepsy as a disability that is still so often feared. Specific gaps in epilepsy awareness and a lack of access to specialist care and mental health services have been clear barriers in my journey.

Here, I will consider how my role as a Counselling Psychologist in private practice has been impacted by my disability, and what further action is needed to support people like me. I'll also look to explain why psychologists – the experts in understanding the complex relationship between social factors, cognition and behaviour – have such an importan role in supporting the unique experiences of people with epilepsy.

Epilepsy – shedding light on the facts

Epilepsy is a neurological disability characterised by brief, recurrent disturbances impacting normal electrical activity in the brain, which leads to unprovoked seizures (Kang, 2023). Globally, around 50 million people have epilepsy, which makes it one of the most common neurological conditions worldwide (WHO, 2024). The type of epilepsy a person experiences largely depends on the location in which it originates in the brain. With a diagnosis of partial seizures occurring in the temporal lobe, my symptoms include being frequently subjected to a loss of awareness and impaired consciousness. Exhibiting signs of confusion and altered behaviours, the seizures may also result in falls and repeated injury. Before a fall, I'll get a déjà vu experience, which is my only warning I may be about to lose control of my body and my surroundings. I feel an intense sense of fear and dread preceding a fall which I have never been able to find the language for. Learning to live with the unpredictability of my epilepsy has been an upward struggle. 

Under the Equality Act (2010) in the UK, you are considered disabled if 'you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities'. Having epilepsy calls into question sources of daily coping and can negatively impact social and psychological functioning and independence (Saadat et al., 2022). People with epilepsy (PWE) face many daily challenges, and often report poor physical health, co-occurring medical disorders, and cognitive impairments such as poor memory and concentration (Hermann & Jacoby, 2009). 

The day-to-day experience of someone with epilepsy involves intensely navigating the impact of the psychosocial stressors that partner the disability. The psychosocial complications of epilepsy are not new and have prompted attention in both public health agencies and specialist support groups (Hermann & Jacoby, 2009). For those with refractory epilepsy like me – seizures that do not respond to medical treatment – the psychosocial impact of epilepsy is particularly marked, not least is learning to manage and accept the aftermath of possible injuries after a fall. Understanding the stressors to my seizures is therefore an important part of their management. Further, a psychological component to experiencing refractory epilepsy is identifying my own sense of 'locus of control' (Hermann & Jacoby, 2009). Not having a baseline for when my next seizure may happen unquestionably impacts what does and doesn't feel within my control. My daily activity is therefore based on a degree of anticipation. 

Psychological disorders are twice as likely to occur in people with epilepsy than the general population (Michaelis et al., 2018). There is a further widespread presence of both depressive and anxious symptoms in PWE which has been correlated with a poor quality of life (Tombini et al., 2024). According to a 2024 report from Epilepsy Action, 85% of PWE reported experiencing anxiety and 70% reported experiencing depression. 69% of people reported that epilepsy limited their independence, and 50% reported feeling lonely or isolated. Sadly, epilepsy continues to be a highly stigmatised condition, and the powerful effects of social labelling and the process of internalising negative stereotypes is undoubtedly detrimental to both the mental health of PWE and their sense of self-empowerment. 

Epilepsy and a career as a psychologist

Disabled people continue to be underrepresented in a vast array of domains, and this is no more evident than in the profession of psychology (Andrews et al., 2019). When exploring the notion of diversity and inclusion in UK psychology, the statistics are startling. Hackett and colleagues (2020) report that whilst 21% of the total UK population identified themselves as disabled, only 12% of psychologists have a declared form of disability. This serves to highlight the extent disabled psychologists are marginalised within the realm of psychology. 

The needs and heartfelt voices of psychologists with disabilities have evidently either been minimised or overlooked (Lund, 2018). Of course, disclosing a disability is a personal and often complex decision to make (Pennington, 2010). Psychologists, like everyone else, are vulnerable to the potential impacts disclosing a disability can have on their sense of self, with clear evidence pointing to a medical model of disability that favours the 'othering process' of 'deficit' and 'impairment' (Loja et al., 2013). Further, an individual's 'cultural script' of disability may or may not provide the 'safe frame of reference' where disclosure feels acceptable (White & White, 1975). 

People with epilepsy typically have lower levels of education and unemployment (Kang, 2023), with many having lower achievement expectations. As a Counselling Psychologist with epilepsy, I have been fortunate to enjoy every step of my professional journey, but I have encountered numerous hurdles in my attempt to do the professional job I am qualified to do. Whilst my condition is neurological, the physical constraints of severe fatigue post seizure create a strong sense of vulnerability – being prepared to cancel sessions at short notice to recuperate is at times necessary, but challenges my own perception of effective professional practice. 

For some PWE, the adverse effects of anti-epileptic drugs (AED's), the fear of having a seizure at work, and a felt need to explain and legitimise their 'unwellness', all compromise their professional life in some way. In addition, internalised shame stemming from feelings of inadequacy and perceived incompetence has meant masking or minimising their epilepsy largely through fear of discrimination. I am certainly conscious of the fact that epilepsy as a disability continues to be ridiculed, and navigating my way through professional channels has resulted in underplaying its significance. What's more, when a disability is viewed as some kind of 'misfortune' it is frequently an antecedent to 'special treatment' – something I feel particularly uncomfortable with (Belanger & Laube, 2017).

'Wearing difference with pride'

"Disability pride doesn't mean loving every aspect of our disability, body, mind, or experience. It is nuanced and varied and means something different to each of us, but it means we get to be part of a vibrant community that we can be proud of" (Yu, 2025, p.62). 

As both my personal and professional develop, my script around my disability increasingly moves from a position of exclusion to one of individuation. I continue to learn to feel more comfortable with my experience of epilepsy, and there is more acceptance of the life events that come with being diagnosed with the disability. I make every attempt to build a positive personal and social identity (Loja et al., 2013) that is steeped in 'expression of difference' (Minikin, 2021). 

Embodying this difference has potential implications for my role as a psychologist. At minimum, it offers space for curious and open discussion around epilepsy amongst peers, and where applicable, in the therapeutic space with my clients. Disclosing a disability in therapy is of course a complex issue, and as a baseline requires that we as psychologists have profound contact with what our own script of 'difference' looks like (Oates, 2021). Giving myself the 'permission' to adopt a positive identity about my epilepsy invites others with a disability to consider taking a similar path, but this does not mean that every person with a disability will, or that they are expected to. At a macro level, feeling comfortable with my epilepsy helps to encourage the contesting of normativity created largely by dominant ableist groups. As a person with a disability, I endorse the notion of human variation, and for me this means appreciating and celebrating inherent 'OK-ness' in the pursuit of freedom and equality (Steiner, 2012).

Further action 

Recents studies have demonstrated a progressive shift in public attitudes worldwide towards people with epilepsy, but there continues to exist invalidating scripts and misperceptions about the disability (Hermann, 2009). Whilst my own disabled identity is bound by a healthier script of acceptance and personal value, people with epilepsy and disabilities in general continue to confront narratives that reduce their disability to 'a less than' narrative, emphasising a need for 'correction or normalization' (Edwards & Imrie, 2003). Education and awareness are paramount in improving treatment outcomes, and this includes sharing personal stories to improve understanding of the condition.

Highlighting the impact that psychosocial factors and epilepsy treatments have on the quality of life for people with epilepsy has led to more investment in understanding the role that psychological treatments have on improving overall health (Michaelis et al., 2018). I agree with Saadat and colleagues' (2022) proposal that psychosocial problems can be just as disabling and damaging than the seizures themselves: they point to exposure to repeated uncontrollable events, a fear of being misjudged or not being taken seriously, and possibly the anticipation of experiencing a seizure in the workplace. Treatment strategies may therefore want to bring attention to the psychological and social dimensions of epilepsy. 

Unfortunately, whilst support systems in the form of medical care for my epilepsy have been consistently available to me as a first line treatment, not once over the course of my treatment has psychological support been offered. This is quite remarkable given that people with epilepsy are confronted with several daily challenges that contribute to poor mental health and a lower quality of life. Access to psychological treatment that supports learning to cope with and manage a disability like epilepsy needs to be part of a standard treatment package, perhaps by offering psychological support in epilepsy clinics. Patients like me have lived far too long with racket feelings of shame, guilt and helplessness, and we need to give ourselves the permission to take control of debilitating scripts that impact who we think we are and what we think we can and cannot do. Sugarman (1979) accurately describes my own therapy process in that it has allowed me to 'renew my contract', to recognise that I am 'OK' and to accept that others are OK too (p.43).

Psychologists therefore play a vital role in the lives of people with epilepsy in employing interventions that serve to improve their mental and emotional well-being. Rasing awareness of epilepsy as a disability, learning about the overlaps between seizures and psychological factors, and encouraging the investigation of effective psychological treatments are areas that are arguably evolving, but continue to need a lot more attention if momentous change is to occur. 

Would you like to give you and your disability a voice? 

I am passionate about combining the disciplines of psychology and disability, specifically what it's like to be a psychologist with a disability and the impact it has on both our personal and professional development. I am keen to understand and enable others to share their experience. 

I am currently editing a book, Psychologists with Lived Experience of Disability: Navigating Clinical Practice, which is contracted by Routledge and is due to be completed by March 2026. I am looking for other psychologists to contribute by writing a chapter that focuses on their experience of a disability, framing the experience through the lens of their chosen theoretical framework. 

If you are interested in contributing, please email me for further enquiries: [email protected]

References and further reading

Andrews, E., Forber-Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C. R., & Balter, R. (2019). #SaytheWord: A Disability Culture Commentary on the Erasure of "Disability." Rehabilitation Psychology, 64(2), 111–118. 

Belanger, E. & Laube, J. (2017). Discounting the Disabled. Transactional Analysis Journal, 9(1). 47-50. 

Edwards, C., & R. Imrie. (2003). Disability and Bodies as Bearers of Value. Sociology-The Journal of the British Sociological Association. 37(2), 239–56. 

Epilepsy Action (2024). 

Equality ACT (2010) UK Government.                       

Hackett, R.A., Steptoe, A., Lang, R.P. & Jackson, S.E. (2020). Disability discrimination and wellbeing in the United Kingdom: a prospective cohort study. BMJ open, 10(3) e035714. 

Herman, B & Jacoby, A. (2019). The Psychosocial Impact of Epilepsy in Adults. The Journal of Epilepsy and Behaviour. 15(1): 1-15. DOI: 10.1016/j.yebeh.2009.03.029.

Kang, W. (2023). People with epilepsy have poor life satisfaction and self-rated health: Findings from the United Kingdom. Frontiers in Psychology. 13:986520. DOI:10.3389/fpsyg.2022.986520

Loja, E., Costa, M.E., Hughes, B., & Menezes, I. (2013). Disability, embodiment and ableism: stories of resistance. 28 (2), 190-203. DOI: 10.1080/09687599.2012.705057

Lund, E. M. (2018). Disability as diversity in professional psychology: A continued call for research and action. Training and Education in Professional Psychology.12(4), 295–296. 

Lundgren, T, Dahl, J & Hayes, SCJJobm. (2008). Evaluation of Mediators of Change in the Treatment of Epilepsy with Acceptance and Commitment Therapy. Journal of Behavioural Medicine.  31(3): 225-35.

Michaelis, R., Tang, V., Goldstein., L; Reuber, M., LaFrance Jr. W.C., Lundgren, T., Modi, A.C., & Wagner., J. (2018) Psychological Treatments for Adults and Children with Epilepsy: Evidence-based Recommendations by the International League Against Epilepsy Psychology Task Force. International League Against Epilepsy. 59:1282-1302. DOI: 10.1111/epi.14444

Minikin, K. (2021). Relative Privilege and the Seduction of Normativity. Transactional Analysis Journal, 51(1) 35-48. 

Oates, S. (2021) What If My "I'm OK, You're OK" Is Different From Yours? Could the Inherent Optimism in Transactional Analysis Be A Form of Compulsory Ableism? Transactional Analysis Journal 51(1), 63-76. DOI: 10.1080/03621537.2020.1853353

Pennington, A. (2010) Disability Disclosure-A Literature Review. Journal of Occupational Psychology, Employment and Disability. 12 (2). 52-29. 

Saadat, S., Sheykhangafshe., Eghbali F., Khatami, S., & Isanazar, A. (2022). Epilepsy and Psychological Interventions: A Systematic Review Study (2022). Romanian Journal of Neurology. 21(1): 15-21. DOI: 10.37897/RJN.2022.1.3

Steiner, C (2012) The OK Position: Freedom, Equality, and the Pursuit of Happiness. Transactional Analysis Journal. 42(4), 294-297. DOI: 10.1177/036215371204200408

Sugarman, M. (1979). From Being a Stutterer to Becoming a Person Who Stutters. Transactional Analysis Journal, 9(1), 41-44. DOI: 10.1177/036215377900900108

Tombini, M., Narducci. F., Ricci, L., Sancetta, B., Boscarino, M., Quintiliani, L., Lanzone, J., Straffi, M., Di Lazzaro, V., & Assenza. G. (2024). Resilience and Psychosocial Factors in Adults with Epilepsy: A longitudinal Study. DOI: 10.1016/j-yebeh.2024.109746

Turner, D. (2021) Intersections of Privilege and Otherness in Counselling and Psychotherapy. Routledge. 

White, J & White, T. (1975). Cultural Scripting. Transactional Analysis Journal. 5 (1), 12-23. DOI:10.1177/036215377500500104.

World Health Organisation WHO (2024). Epilepsy: Key facts. 

Yu, T. (2025). Forward In: Dhanda, S. The Anti-Ableist Manifesto. How to Build a Disability Inclusive World. Souvenir Press. p62.