Epilepsy is not a mental illness, yet children and young people with epilepsy are four times more likely to develop a mental health problem than their peers.
The mental health difficulties they experience often have more of an impact on their lives than the epilepsy itself. But with the right help and support, their mental health can be significantly improved.
Our #OnTopOfEpilepsy campaign seeks to highlight the relationship between epilepsy and mental health. We’ll be asking the NHS to improve children’s and young people’s access to mental health support as an integrated part of their epilepsy care.
We're asking young people with epilepsy to tell us about their experiences of mental wellbeing and living with epilepsy.
Sharing your experiences will help us make the case for better mental health support and could help another young person living with epilepsy.
These questions are for young people with epilepsy in the UK (up to age 25). If you're a parent / carer, please support your child to respond. If this is not possible, please respond from your child's perspective.
Daisy was seven when she was diagnosed with epilepsy. “My teacher had noticed that I was having ‘daydreams’ and suggested that I had some checks”. Her main type of seizures are absence seizures “where I go into a brief ‘trance-like’ state of unconsciousness. I spend a few seconds looking into the unknown before coming back.”
Now 18, Daisy reflects that “looking back, I’d like to have known what epilepsy was. At the time, the doctors just told me, “This is what you have, off you go”. When I was first diagnosed, I was terrified. They told me it was a disability. I was heartbroken. I thought none of my friends would like me anymore and they’ll think I’m weird.”
Mental health support is just as critical as physical health support for young people with epilepsy, something that Daisy knows first-hand. Being a young person moving through their teenage years, making life choices and experiencing the academic and career pressures of growing up is difficult enough. But being a young person with the fear and worry of epilepsy can make things even more tricky to navigate.
“Epilepsy has affected my mental health quite a lot and I’ve found it quite isolating. You have this condition, that a lot of people have, but people can’t get their heads around it.”
“I always think, what if something happens? I’m already quite anxious, and there’s this massive added thing sitting on my shoulders.”
Daisy’s experience with mental health support as a young person with epilepsy is dangerously disappointing and it’s testament to her bravery that she’s sharing her story.
“I’ve lived with really bad anxiety, depression, self-harm and eating disorders. I’ve been to see my doctor’s numerous times asking them for help. But each time I’ve been told that I’m “not ill enough” to qualify for help.”
“My mental health also affects my epilepsy. Stress triggers more seizures, I don’t eat when I feel down and that affects my epilepsy which then affects my mood. It’s a vicious cycle.”
Our youth-led campaign OnTopOfEpilepsy, aims to highlight the very real relationship between epilepsy and mental health difficulties. We’ll be asking the NHS to improve children and young people’s access to mental health support as an integrated part of their epilepsy care.
The reasons young people with epilepsy often experience mental health difficulties.
Injury to the part of the brain that controls our moods is a common cause of epilepsy. This can lead to difficulties with emotions and mental wellbeing.
Hormone fluctuations, such as during puberty, can affect both an individual’s mood and, or seizure frequency.
Feeling confused, sad, worried, irritable, frustrated, or angry in the hours and days leading up to and, or following a seizure is normal.
Epilepsy medications, known as anti-seizure medications, or ASMs, are important for managing the frequency and length of seizures. But for some people they can also positively and negatively affect mood.
ASMs work by affecting the brain cells and neurotransmitters in order to manage seizures. Therefore, they can also have an effect on our mood and mental wellbeing generally, and can also affect processing speed, leading to feeling frustrated and low.
Living with epilepsy is especially tough for children and young people. Navigating childhood, puberty, the teenage years and becoming a young adult with the peer pressure, academic expectations and life choices these years bring, can be a tricky experience for anyone. Living a young life through the lens of social media can also make things more difficult.
For a child or young person with epilepsy, there’s the need to add in living with a condition that can be frightening and unpredictable, as well as often stigmatised. Seizures can happen at any time, including whilst at school, out with friends or when they are on their own. For some, this means a constant anxiety over personal safety and the knowledge that their education and future career may also be affected. It can be lonely too, if family members and friends simply don’t understand.
If you'd like to help improve mental health support for children and young people with epilepsy, please sign up below.