Firstly, Torie highlights: “Health and well-being is of course important for everybody, but the impacts of poor physical health, mental health and overall well-being can be severely impactful for people living with an epilepsy: they can be seizure triggers.”
A common misconception is that people with an epilepsy should not exercise, however many studies have shown that this is not the case.[i] Torie recommends that exercise can be beneficial for people with an epilepsy, but going at their own pace and slowly building up confidence is key.
“Take it slow if you haven’t exercised in a while. If you worry about leaving the house, perhaps try doing something at home or with somebody you trust. If you have physical limitations, just do what you can. I helped a young girl with an epilepsy, who was also in a wheelchair and had severe Intellectual Disability, exercise. We played with her with streamers: she grinned, lifted her head, moved her arm and her core. That was a marathon for her, and it was wonderful! I love power walking around cities. Sometimes indoor gardening or cleaning counts. You can raise any potential barriers with your HCP, as they know the importance of exercise upon physical, mental, social, and neurological well-being, and indeed overall quality of life.”
Torie maintains that it is important, however, to recognize that there may be additional considerations people living with an epilepsy need to take when exercising.
“Epilepsy is a diverse disease with a diverse range of comorbidities, so the potential for exercise differs among people,” explains Torie.
“Many of us are really tired from seizures, mental health morbidities and the medicines we take to manage our condition, and it’s important that we take this into consideration. It’s also important that if you are having difficulties sleeping, to discuss it with your HCP, as sleep undoubtedly has an impact on well-being.”
“Give yourself credit for what you can achieve" is something Torie believes strongly in: “Some days are better than others and it’s easy to get to the end of the day, feel like you’ve achieved nothing, and feel awful about yourself (something which is common due to the high rate of depression and memory issues amongst those with an epilepsy). But recording little achievements and healthy habits can be really useful. It enables you to reflect upon and give yourself credit for what you have been able to achieve that day.”
Beyond exercise, there are many ways to boost well-being when it comes to living with an epilepsy. Torie feels that learning about the epilepsies, at your own pace, can be empowering: “Learning about how something affects both yourself and others enables you to gain perspective. It builds your confidence when it comes to living with and talking about your epilepsy. It also helps you to appreciate what you can do and manage any limitations.”
"In addition, having a daily routine and recording your seizures, mental health, menstrual cycle, if you have one, and physical activities, can give you some kind of sense of control. It can help in identifying patterns, for example, if you have seizures when you’re tired, stressed, excited, too hot or exhausted. You may be able to identify correlations and make adjustments in your life that could improve your emotional, physical, and neurological well-being."
Torie stresses that relationships are a key part of well-being too: “It can help to talk about your epilepsy to somebody you trust and speak about why you need support. Educate the people around you and reach out for help if you need it. Vulnerability is not a weakness.”
For those supporting somebody with an epilepsy, Torie suggests: “Sit back, listen and recognize things you don't understand. Many people don't understand what it can be like to have an epilepsy. Saying something like ‘I don’t really get it, but I recognize what you’re saying, how can I support you?’ can make somebody feel really heard and valued”.
Torie also talks about recognizing the similarities in experiences between those with an epilepsy and those with other diseases: “Some of what we, people with an epilepsy experience, is often experienced by people with other diagnoses. Learning and acknowledging this can give you perspective and help you feel less alone, which then can improve your emotional well-being.”
Finally, Torie shares some ways she likes to practice mental and physical well-being. “Some of the things that help me are going to bed early, making sure I can sleep by limiting my caffeine intake, exercise, and mental health therapy. It’s also about doing those small things that you enjoy: looking after my plants acts as mindfulness for me.”
Torie’s final tip: “Ultimately, it’s about being kind yourself, and know you deserve to prioritize yourself and your well-being.”
You can support the efforts of the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) this International Epilepsy Day by helping to spread awareness and continuing to learn about epilepsy.
Torie interviews global-lead clinicians, scientists and geneticists about their work and research into epilepsies on her Epilepsy Sparks Insights podcast series. She also shares information about epilepsy for those living with the condition and others who are interested in learning more. To learn more about epilepsy and hear more from Torie, visit her website at torierobinson.com and the organisational one epilepsysparks.com.
[i] Arida RM et al., Physical activity and epilepsy: proven and predicted benefits. Sports Med. 2008 [Accessed November 2023]