Talhiyha Harrasy has had epilepsy since childhood. Although now seizure free she often reflects on how the condition still affects her life; both physically and mentally.
Talhiyha developed epilepsy after contracting meningitis at the age of three; ‘my epilepsy often makes me feel awkward, I remember years ago at school I had a seizure and I felt it frightened people.’ This experience makes it difficult to talk about her condition, and has affected her throughout her life.
‘My epilepsy often makes me feel awkward’
Talhiyha Harrasy – Epilepsy sufferer
Across the world, a New Zealand blogger with epilepsy has made the choice to not disclose his condition to employers due to fear of discrimination and further isolation. This is an issue with many sufferers who do not willingly share their epilepsy with others.
Because of this need for secrecy the challenge faced by epilepsy charities is removing the misunderstanding of the condition as well as the fear. By educating communities the unknown factor behind the neurological condition is removed while simultaneously preventing isolation.
On the other side of the spectrum is Amy Spencer; diagnosed with epilepsy at the age of 16 she believes ‘people with epilepsy are able to live fairly normal lives we just have to find little ways to deal with difficult situations. I can live a normal life and I think I’m a fairly normal person.’ Instead of letting her condition isolate her, she has surrounded herself with understanding friends and family who act as her support system.
I can live a normal life and I think I’m a fairly normal person
Amy Spencer – Postgraduate Student
Epilepsy is a neurological condition that affects over five hundred thousand people in the United Kingdom. Recent studies have come to recognise epilepsy as a lonely and isolating condition.
Recent surveys conducted by Epilepsy Action have found that six out of ten people with epilepsy have experienced feelings of loneliness. As well as this, there is a strong connection to high levels of stress and anxiety associated with the condition.
Those forthcoming about their condition are trying to strengthen awareness and research capabilities. Their aim is to increase the conversation surrounding epilepsy and encourage a wider understanding that this condition is treatable and does not have to be dealt with alone.
Epilepsy action bracelets, being sold for £2 to help raise funds.
Stacey McClean, Epilepsy Action ambassador and former S Club Junior star, was surprised by the survey results; ‘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.’
‘Nobody should have to feel this way’
Stacey McClean – Epilepsy action embassador
Chantal Spittles – reading a statement from Epilepsy Action about breaking the cycle of isolation
Although many of the people surveyed did find some difficulty in coping with their condition it is not the case across the board. The NHS and charities such as Epilepsy Action offer continued support and information to those with epilepsy and their families.
Through combined efforts the isolation and struggles of loneliness amongst people with epilepsy is being tackled. If you have any thoughts on the subject get in contact through our twitter on @CBJnewsreports
East Midlands Survey Results
There are 44,000 people living with epilepsy in the East Midlands – 7,700 of these are in Nottinghamshire
59% of people with epilepsy in the East Midlands have experienced feelings of loneliness
Respondents reported experiencing high levels of stress (73%), low mood (73%) and anxiety (76%)
74% said that having epilepsy had a negative impact on their ability to take part in certain activities or events
Figures from 1,129 people with epilepsy surveyed by Epilepsy Action from November 2016 to January 2017.