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by Katrina and Ally
This blog post is part of the LUNA Science Communication Series, a series where research relevant to Disabled folks is broken down for Disabled folks. Katrina shares research carried out for her dissertation on epilepsy and physical activity, and Ally reflects on how this research fits in with her lived experience.
You can listen to this blog here: https://open.spotify.com/episode/4A2RBQ5MTZyIBKwgSzkDrl?si=626514b2c6604d78
Epilepsy is a common brain condition where someone experiences repeated seizures, varying from daily episodes to infrequent occurrences across many years. People with epilepsy have also been shown to be at an increased risk of other conditions such as anxiety/depressive disorders, cerebrovascular disease (problems with blood supply to the brain), and heart conditions.
Physical activity (any bodily movement) has been shown to prevent many conditions, including those above, from developing. Early research is showing that being active may reduce (or have no impact on) the likelihood of seizures occurring. Unlike previous recommendations, people with epilepsy are now being advised to keep active, to possibly allow for greater seizure control, but more importantly to help with improved mental and physical health.
Despite this, people with epilepsy are significantly less active than the general population. I looked for existing research to understand why this might be the case, with a small number of studies finding numerous barriers towards activity in epilepsy: fear of seizures and resultant injuries; lack of information on how to be active; the stigma of being active with epilepsy; a lack of social support; and being concerned about high-intensity exercise. This foundation of research tell us about some barriers, however, what can be done with this information? How can these barriers be torn down?
My research aimed to interview people with epilepsy to discuss their experiences of physical activity, what is holding them back from doing more, and what they think could be changed to support this. I then used these findings alongside a scientific model that allows interventions/policies to be designed based on the barriers identified.
Findings:
After completing ten interviews I found several barriers to physical activity in people with epilepsy, summarised by the diagram below.
Research Findings. Note that all names are pseudonyms
The main barriers I discussed in this project (due to lack of previous identification or significant importance to the interviewees) included: invisible disability identity; the embarrassment of seizing in public; the worry of others; not wanting to disclose their epilepsy; and their inability to drive. For each of these barriers, I also suggested some possible solutions from both the participants and the scientific model.
Invisible Disability Identity:
Epilepsy is an invisible disability, meaning that there is often no sign of the condition to other people. Resultantly, this can result in discrimination from the public and those with physical disabilities, in addition to making it difficult to join disability sports groups due to not feeling worthy of the spot.
This barrier is directly linked to a lack of education around invisible disabilities for people with epilepsy, disability activity groups, and the general public. Improved information around this upon diagnosis and group consultations to discuss options around joining disability groups would both be important steps to take in moving towards the acceptance of epilepsy as an invisible disability.
Embarrassment:
Several participants felt embarrassed when they seized during physical activity, with even just the thought of this happening in public putting them off being active. Social anxiety is common in people with epilepsy, meaning this is often a difficult feeling to shake off.
Stigma is a key driver of this embarrassment and something that most people with disabilities deal with in their day-to-day lives. Education is a powerful tool in the reversal of stigma and would be effective in this instance. For example, if the public had a greater understanding of seizures and epilepsy, it would be more normalised when this happens in public.
One participant shared the benefits they had found when leading a sports group for children with epilepsy. Seeing him seize yet continue to be active, it allowed the children to realise that the condition and activity can co-exist and that it is nothing to be embarrassed about.
The Worry of Others:
Alternatively, many people with epilepsy are not afraid of being active with their condition; however, their family might be so concerned that this acts as a barrier. Many recognised the impact that their exercise had on family and were resultantly less active. Families were commonly anxious around their relative seizing during activity, meaning the person with epilepsy feels guilty or selfish when they are active.
This highlights a lack of support for those close to people with epilepsy, suggesting that increased information and reassurance could be beneficial. It is often easy to forget that chronic conditions affect the families too, and to properly implement behaviour change it is important to ensure advice is given to all. Additionally, more epilepsy or disability physical activity groups would allow for safer environments for people with epilepsy to be active in, giving peace of mind to their families.
Non-Disclosure of Epilepsy:
Despite people with epilepsy often being recommended to tell physical activity staff (such as coaches, lifeguards, or leisure centre staff) about their condition, they often hold this information back. This was due to the fear of being turned away, being perceived as incompetent, or feeling embarrassed in doing so.
Whilst sharing these medical details could result in a safer environment, it puts the responsibility for education and reassurance onto the person with epilepsy, rather than the physical activity environment understanding the adaptations and assistance required; essentially this means that people with epilepsy have to explain their condition to the staff and fight for what they are capable of, rather than the staff knowing to support this person from the get-go. Epilepsy-confident facilities/groups would allow for people with epilepsy to know where they can be active in an educated, trained, and inclusive environment – this is an idea which should be pushed for my charities.
Inability to Drive:
Due to the restrictions around driving with seizures, people with epilepsy are limited in their opportunities to go to places to be active or supportive groups. They are often reliant on public transport, however, one interviewee explained that her para-climbing group meets at a place which can only be accessed via car. This calls for the improvement in public transport facilities and ensuring that safe spaces for exercise for people with disabilities can be accessed through these means.
Reflection on Findings …
Whilst I only interviewed 10 people, I felt that I gained valuable insight into the difficulties people with epilepsy face in being active at an individual, societal, and environmental level. Education and opening more inclusive activity opportunities are key factors that would address the differences in physical activity levels between the epilepsy and able-bodied community. Equality is a big buzzword at the moment, meaning that everyone should have equal opportunities. However what is perhaps more important is equity, which recognises that every person has different circumstances and barriers to face and therefore requires different support and resources to reach the same outcome. To translate this into practice, equality means that every person has access to leisure centres; equity means that “epilepsy confident” leisure centres have extra training that allows them to provide extra assistance for people with epilepsy who may need it. From this research, I believe that we have a long way to go before people with epilepsy can be active in an equitable country.
One limitation of this research that is important to note is that the interviewees were all of a white ethnicity. This was not deliberate, but a result of who signed up for the research. Research suggests that people from ethnic minority communities are less active and therefore it is important to realise that they may face additional barriers on top of the ones mentioned here.
Ally’s Reflection …
I jumped at the chance to be involved in the research that Katrina was doing when I saw it advertised on social media. Prior to being diagnosed with epilepsy at 17 I was very active and was a part of a gymnastics team, which I trained with a couple of times a week. When I started having seizures I had to give this up, and have found it really challenging to get back to being so active.
All the barriers that Katrina identified resonated with me. I found it particularly interesting that, other than fatigue associated with medication and seizures, pretty much all the barriers were external. Other people's attitudes, spaces not being set up for people with epilepsy, people not knowing what to do, lack of good public transport, etc. These are all things that with some work from society as a whole, and specifically within the sports world, can change.
Having been really involved in a sport, I know just how positive it can be for your mental health. A community of people who you work hard with and have fun with weekly is an incredible thing to have, and everyone who wants this should be able to have it. As Katrina highlighted, people with epilepsy are a group of people who need this even more than most and so it is very frustrating that there are all these barriers. Having these barriers identified is a really important first step. I would encourage anyone reading this who works in the sports world to think about what you do just now to make your space safe and inviting for people with epilepsy, and what more you could do.
Bio:
My name is Katrina (she/her) and I have just completed a BMedSci degree in Physical Activity for Health at the University of Edinburgh. I completed this in the middle of my Medical degree, and carried out this research project for my dissertation. As a medical student I find it incredibly frustrating when we are taught to tell people to be more active, with no consideration on what might be preventing someone from doing so. Resultantly, I wanted to look into the barriers people face towards physical activity, and somehow I landed on epilepsy as an important topic to shed some light on.
My name is Ally (she/her) and I am just about to go into my final year of a psychology degree at the University of Glasgow. I like being outside, doing creative things, and being a volunteer with The LUNA Project.