In the Young Epilepsy survey, young people described the impact on mental wellbeing as anxiety/worry, depression, life-changing, impact on self-worth/identity, isolation, overwhelming, lack of control, fear, stress and feelings of suicide.
"[Living with epilepsy] has affected all areas of [my] wellbeing, but the mental impact has been the hardest to deal with."
"Epilepsy has completely changed who I am as a person, affected my confidence and I have developed a life-long battle with anxiety."
Young people told us that their mental wellbeing has an impact on different areas of their life, with two thirds (66%) saying it had affected their physical health. Three quarters (77%) said their mental wellbeing affected time with friends and 57% said it had an impact on learning.
The survey asked about young people’s experiences of managing their mental wellbeing alongside their epilepsy. Around half of the young people (52%) said they do not find it easy to talk about how living with epilepsy makes them feel.
Young people shared the things that had helped improve their mental wellbeing, including family and friends, physical activity, talking to someone, creative arts and connecting with other young people with epilepsy. They also shared their advice to other young people with epilepsy about mental wellbeing.
“Be kind to yourself and don’t feel ashamed of your diagnosis.”
“If you’re struggling, just know you’re not alone and you deserve help and to be happy.”
Key themes from young people’s advice were:
- Talk to someone
- Ask for help
- You’re not alone
- Be kind to yourself
- Stay strong
- Keep going, things can get better
- Try to accept your situation
Young Epilepsy’s #OnTopOfEpilepsy campaign is raising awareness of the links between epilepsy and mental health and calling for mental health support to be integrated into paediatric epilepsy care.
