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A Qualitative Exploration into the Experience of People Living with Epilepsy and Mental Illness

By Ally Lloyd, Supervised by Dr Chiara Horlin (School of Psychology, University of Glasgow)

Content Warnings: mention of suicide and self-harm and discussion of distress.

You can listen to this post here


Epilepsy is a neurological (brain) disorder that about 1 in 100 people around the world live with, making it one of the most common neurological disorders. It is characterised by recurrent seizures and the impact they have on someone's life (ILEA., 2014). Epileptic seizures are caused by abnormal electrical activity in the brain and can present in many different ways beyond the stereotypical presentation that you may have seen on TV where someone drops to the floor and shakes (a tonic-clonic seizure).


Of the 1 in 100 people with epilepsy around one in three of them will be diagnosed with a mental illness during their life. This is significantly higher than is found in the general population (1 in 5), and even then that 1 in 3 figure is widely accepted to be an underestimate (Lu et al., 2021). Research tells us that this co-occurrence of epilepsy and mental illness tends to be associated with worse outcomes, and a co-occurring mental illness is the strongest predictor of poor quality of life in people with epilepsy (Alsaadi et al., 2017). The co-occurrence of epilepsy and mental illness (also known as a comorbidity) is associated with worse treatment outcomes (Michaelis et al., 2018), a more difficult disease course (Josephson et al. 2017), and even seems to be linked with shorter life expectancy (Kanner., 2016).


The research I was reading was detailing negative outcome after negative outcome, but none of it looked at how this comorbidity affected a person's life on a day-to-day basis. Further, none of the research took a qualitative approach. Qualitative research centres people with lived experience, seeing them as experts in the topic at hand and asking them about their understanding and interpretation of a given topic or issue (in this case, the experience of living with epilepsy and mental illness).


So, I went into my dissertation looking to talk to folk with lived experience in order to answer two research questions:

  • Research Question 1: How do people living with epilepsy and mental illness understand the relationship between the two?

  • Research Question 2: What is the day-to-day experience of living with epilepsy and mental illness?

To answer these questions, I conducted three interviews with people living with epilepsy and mental illness. These interviews took place online and lasted around an hour. I went into all the interviews with some open questions to frame the interview, but the conversation followed the directions the folk I was talking to wanted to take it in. I feel incredibly privileged to have had these conversations, and am so grateful for the openness and trust of everyone I talked to. I then transcribed the interviews in order to allow me to conduct a qualitative analysis technique called Interpretative Phenomenological Analysis (IPA) on them. Interpretative Phenomenological Analysis sounds pretty intimidating but really it is just a way to get meaning from the transcripts that focuses on how participants make sense of experiences and topics that matter to them.


Findings

Through doing this, I developed a total of five themes - two in relation to research question 1 and three in relation to research question 2. Below I will share the name, a brief summary, a quote from a participant, and an illustrated version of each theme.


Research Question 1: How do people living with epilepsy and mental illness understand the relationship between the two?


Theme 1. An Endless Cycle

Participants understood the relationship between their epilepsy and mental illness to be that of a cycle, where the conditions interacted with each other to create an endless cycle.


“It feels like you're stuck in the loop a lot of the time because the more you have a seizure then the more anxious and depressed you get and then you're more likely to have a seizure (laughs). It's just, it feels very self-destructive at times.” (Chava)


Theme 2. A Blurred Relationship

Participants also understood their epilepsy and mental illness as being blurred and overlapping, often struggling to work out where one condition ended and the other began.


“With bipolar, like how do you, how do you know when you're going into a depressive part of that cycle versus when if you're struggling because your seizures are unmanaged and life just sucks sometimes, you know?” (Alice)


Research Question 2: What is the day-to-day experience of living with epilepsy and mental illness?


Theme 3. Stigma

An awareness of the stigma society has towards epilepsy and mental illness individually had a really big impact on participants.


3a. Social Exclusion and Isolation

All participants had experienced exclusion and isolation, which participants understood to be a result of stigma. For many participants experiencing exclusion due to stigma led to them isolating themselves to prevent further hurt.


“Seeing those things (seizures) and not knowing how to handle them kind of makes people not want to be here as frequently, especially while they're so unmanaged“ (Alice)


3b. Stigma negatively impacting healthcare

All participants identified healthcare as an area where they had particularly been impacted by stigma, causing negative healthcare experiences.


“So, I actually didn't find out until this past October that I've been having seizures my whole life because everybody just blew everything off to mental health problems, especially with bipolar having such like this stigma of craziness and unpredictability around it, they're like, “well, that's that's what it is that that has to be it”.” (Alice)


Theme 4. Feeling out of control

All participants felt disempowered and out of control. This experience was dynamic, sometimes overwhelming, and sometimes like background noise. Participants attributed this to their health taking away control and systems, particularly healthcare, in which they felt they had little agency.


4a. Health conditions in control

Participants understood specific symptoms and the ‘cyclical’ relationship between their epilepsy and mental illness to create a situation where they felt disempowered and out of control.

“I was getting more and more depressed to the point where I was and like self-harming and having suicidal thoughts um because I just seeing everyone around me doing things I couldn't or like going on with their daily lives where I felt like I was stuck um there was just times where I thought like I'm never gonna get to where everyone else is so what's, what's the point?“ (Chava)


4b. Lack of Agency in Healthcare

Participants also made sense of feeling out of control as a result of being in situations, systems, and settings where their agency was taken away. One example explored by all participants was healthcare, a setting in which this feeling of disempowerment was worsened by the way that their health conditions meant that they needed to remain in the healthcare system even after bad experiences, taking away their control.

“I would go to doctors and say these things and they’d say ‘no, that's your mental health. That's anxiety that just they present the same way’.” (Alice)


​​Theme 5. High Mental Load

Participants understood their day-to-day lives to be significantly affected by a high mental burden that came from their comorbid epilepsy and mental illness.


“So it's definitely very anxiety inducing because even when I'm not having sei zures, it's still at the back of my head like am I going to? and I have to think okay, have I got like information on me for if I do have a seizure um and so I can't go a day without thinking about it, even if I'm having a good day, it's still constantly affecting me.” (Chava)


What next?

Overall, people with epilepsy and mental illness experience the comorbidity as highly interconnected and overlapping, and it impacts their day-to-day life significantly and negatively.


There are really important learnings and lessons to take forward from this research about the experience of people with epilepsy and mental illness. The impact on people's life is significant and negative and the comorbidity is associated with distinct challenges. There is a need for tailored support for people with epilepsy and mental illness. Epilepsy and mental illness are not experienced as two separate conditions. We need to move towards holistic and joined-up healthcare and support is needed to reflect this.


I hope this will be the first of many, many research projects that qualitatively explore the experience of people with epilepsy and mental illness. Epilepsy and mental illness are both umbrella terms encompassing a diversity of symptoms and experiences and more research would help to shine a light on the nuance and differences in folks' experiences.

Thank you again to the people who shared their experiences so openly and so honestly as part of this research.


Thank you for reading - I hope you will take what you have read and use it to keep the conversation about epilepsy and mental illness going.

All good things,

Ally


If you are reading this and want to get support then I would recommend reaching out to your epilepsy specialist nurse, checking out the Epilepsy Scotland wellbeing support service, or having a look at Epilepsy Action’s resources and making use of their helpline. There are lots of resources out there to support you and you are not alone.


If you are reading this and want to know or talk more about it, please get in touch via the LUNA Project! This is a 900-word version of a 10,000-word dissertation so there is lots more to discuss. Similarly, if you want to read any of the references but don’t have a uni login then let me know and I will see what I can do :)


About the Author

Hi I am Ally (she/her) and I completed my dissertation last year (Sept 2022 - May 2023) and graduated with a degree in psychology with a special interest in neuroscience from the University of Glasgow in June 2023. I feel really lucky to have been able to do my dissertation on a topic that matters so much to me and to combine it with psychology and qualitative research methods (which I love). I now live in Edinburgh and work supporting children and young people with long-term health conditions at the Teapot Trust, and am a trustee and volunteer with LUNA.


References

  • Alsaadi, T., Kassie, S., El Hammasi, K., Shahrour, T. M., Shakra, M., Turkawi, L., Nasreddine, W., & Raoof, M. (2017). Potential factors impacting health-related quality of life among patients with epilepsy: results from the United Arab Emirates. Seizure, 53, 13-17. https://doi.org/10.1016/j.seizure.2017.10.017

  • Lu, E., Pyatka, N., Burant, C. J., & Sajatovic, M. (2021). Systematic literature review of psychiatric comorbidities in adults with epilepsy. Journal of clinical neurology (Seoul, Korea), 17(2), 176. https://doi.org/10.3988/jcn.2021.17.2.176

  • Josephson, C. B., Lowerison, M., Vallerand, I., Sajobi, T. T., Patten, S., Jette, N., & Wiebe, S. (2017). Association of depression and treated depression with epilepsy and seizure outcomes: a multicohort analysis. JAMA neurology, 74(5), 533-539. https://doi.org/10.1001/jamaneurol.2016.5042

  • Kanner, A. M. (2016). Psychiatric comorbidities in epilepsy: Should they be considered in the classification of epileptic disorders?. Epilepsy & Behavior, 64, 306-308.https://doi.org/10.1016/j.yebeh.2016.06.040

  • Michaelis, R., Tang, V., Goldstein, L. H., Reuber, M., LaFrance, W. C., Jr, Lundgren, T., Modi, A. C., & Wagner, J. L. (2018). Psychological treatments for adults and children with epilepsy:Evidence-based recommendations by the International League Against Epilepsy Psychology Task Force. Epilepsia, 59(7), 1282–1302. https://doi.org/10.1111/epi.14444













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