Epilepsy Action’s Purple Day survey has shown just how many of us feel lonely, isolated, stressed and anxious, even when our seizures are controlled. We show some of the survey results and offer suggestions on fighting some of these challenges
People with epilepsy will be aware of just how far-reaching this condition is. While seizures are the first thing that springs to mind when thinking about epilepsy, this is not the only challenge. We deal with things like triggers, tiredness, memory problems or medicine side-effects. We sometimes face challenges with work, education, and relationships, and we often have to deal with some difficult emotions because of our condition.
Epilepsy can affect our feelings – we may lose confidence, start to feel low or feel like we have become isolated. After a while, these feelings can have a knock-on effect on our wellbeing and quality of life.
To mark Purple Day, the global epilepsy awareness day, Epilepsy Action decided to find out just how much epilepsy affects our emotional wellbeing. The charity carried out a survey of over 1,000 people with epilepsy and the results showed quite a stark picture.
The survey results revealed that over half of the people who took part feel lonely or isolated. Importantly, this number was still high even for people who did not have active seizures.
It’s part and parcel of loneliness to feel like you are the only one going through these challenges. But the survey goes to show that we are not alone in feeling like this. According to the results, only about 1 in 10 of us feel part of a supportive community of people with epilepsy, adding to the feelings of isolation.
But this was not the only issue highlighted by the survey. Nearly 8 out of 10 people with active seizures who took part in the survey also reported feelings of stress since their diagnosis. Around 7 out of 10 said they’d felt anxiety or low mood since their epilepsy was diagnosed.
These numbers were a little lower for people who did not have active seizures, but not by much. Around 7 out of 10 people with controlled seizures said they felt stress, and 6 out of 10 said they had anxiety or low mood. These issues were still at a very high level, showing that this is a real issue for many people with epilepsy, whether their seizures are active or not.
Epilepsy Action chief executive Philip Lee 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... It doesn’t have to be this way.”
Managing the extra burden
It is not easy to deal with the challenges brought on by loneliness, low mood, stress and anxiety. For some of us, some of these can affect our epilepsy and trigger seizures. Even when they don’t, they can still have a huge effect on our quality of life and wellbeing.
Everyone feels stress, anxiety and low mood every so often. They are normal responses to difficult situations that we sometimes face. But when these feelings stay with us and don’t go away, this can become a problem.
If this is something you are experiencing, there are some things you can do to reduce the effect of these problems. Some of these feelings can affect a person’s sleep or appetite, but it is important to try to get a regular good night’s sleep and eat a balanced diet. It can also be helpful to make time for regular exercise, if you can, as this causes the release of body chemicals which act as natural anti-depressants. If these feelings continue, you should seek advice from your doctor. There is more information on stress, low mood, anxiety and depression on the Epilepsy Action website. NHS Choices also offers some important information on this topic.
To try to tackle feelings of loneliness and isolation, it may help to talk to family or friends about your epilepsy and about your feelings. There are also some other ways organised by Epilepsy Action for people to meet others going through similar experiences. People can find a local branch of Epilepsy Action to meet people or attend one of the coffee and chat groups. There is also an online epilepsy community, forum4e, where people can share their experiences and hear from others.
Philip Lee added: “Epilepsy Action is there for people when they need us most, whether it’s talking with one of our helpline experts or friendly support at one of our coffee and chat groups.”
The first Purple Day took place on 26 March 2008. It was created in Canada by Cassidy Megan, who was 9 years old at the time. Cassidy has epilepsy and, at the time, she didn’t know anyone else with the condition. She wanted a day dedicated to helping people learn more about epilepsy, and which would show support for everyone with the condition. Today, Purple Day has grown into a global event for epilepsy awareness.
Epilepsy Action has used the survey results to highlight the issues faced by people with epilepsy to the general public for Purple Day. This is important to help more people understand epilepsy and its challenges.
There is more information about Purple Day on the Epilepsy Action website. You can donate £3 to Epilepsy Action for Purple Day by texting PURPLE to 70300. Texts cost £3 plus your standard network rate. UK only. Epilepsy Action will receive 100% of the donation.