People with epilepsy are at serious risk of loneliness and isolation, even if they don’t have active seizures, a national charity has warned.
Epilepsy Action surveyed more than 1,000 people to find out how their epilepsy affects their feelings and emotions. The survey found that six out of 10 people with epilepsy have experienced feelings of loneliness. Respondents also experience high levels of stress, low mood and anxiety, even if they don’t currently have active seizures.
Over three quarters of people (77 per cent) also said having epilepsy had a negative impact on their ability to take part in certain events or activities.
People who took part in the survey said their epilepsy has a significant impact on their self-esteem and identity. One respondent described their condition as making them feel ‘not part of the same human race as everybody else’. Another said ‘epilepsy is like having a storm cloud following you and never being certain when it will break’. Other people described their epilepsy as making them feel ‘unwanted and unloved’, ‘like I have to apologise’ and ‘like walking through thick fog’.
The poll findings come in the run up to Purple Day, the global awareness day for epilepsy, which falls on Mothering Sunday (March 26) this year. Epilepsy Action ambassador and former S Club Junior star Stacey McClean, whose mum has epilepsy, was shocked by the poll results.
She said: “They show us that epilepsy is about so much more than having seizures. It was heart-breaking to read just how badly it impacts on people’s feelings and self-esteem. Nobody, regardless of whether they have a disability or not, should have to feel this way.
“Our lives changed forever when my mum was diagnosed with epilepsy. It came out of the blue – we had no warning or history of the condition in the family. My mum is a strong, independent person and for her to not know when a seizure is going to strike has been the hardest part. She has said that even when she is with people, she can feel alone, just because it can be so hard for others to know and understand what she is going through.”
Philip Lee, Epilepsy Action chief executive, said: “The survey results are a clear indication that the challenges of living with epilepsy are wide-reaching.
“Epilepsy is an invisible condition yet it affects people’s lives in so many ways and can leave people feeling alone, isolated and misunderstood. We know that loneliness can have a significant impact on people’s physical and mental health, and even life expectancy. It doesn’t have to be this way. Epilepsy Action is there for people when they need us most, whether it’s a chat with one of our helpline experts or friendly support at one of our coffee and chat groups.”
To donate to Epilepsy Action, text PURPLE to 70300 to donate £3 to Epilepsy Action. Texts cost £3 plus your standard network rate. UK only.
Epilepsy Action will receive 100 per cent of the donation. To find out more about Purple Day, visit epilepsy.org.uk/purple or call 0113 210 8800.