‘They said I had the devil inside me and I should pray’ - ‘Sarah’ was diagnosed with epilepsy at the age of two but she thought she was being punished by God
A Fylde coast mum born with epilepsy has told how she only found out she had the condition when she was 16 - after growing up being told she had the “devil” inside her.
Sarah (not her real name), now 44, was diagnosed with the neurological disorder by doctors at the age of two.
But she says her deeply-religious family insisted that it was not medical but was the “devil” and “it would be something that would go away.”
Her family was Catholic and she was made to believe she was being punished by God for some reason.
Her mum would tell her to ‘pray’ and ‘go to church’.
It was only when she was 16 and had moved out of the family home that she went to visit a doctor – and found out the truth.
Sarah said: “I went to the doctors to find out, and of course they turned around to me and said, ‘it’s epilepsy’.
“I was like ‘oh, what’s that?
“I had no idea what he was talking about.
“I then went to the library to find out more.”
Sarah, who was born two months premature, has decided to speak out in a bid to raise awareness of the condition as part of a campaign by Epilepsy Action.
She remembers little from her early childhood, growing up in Blackpool, but knows now she was born with the condition and diagnosed at the age of two.
“I remembered having things attached to my head and going to hospital a couple of times,” she recalls.
“I do remember that I didn’t take any medication for it.
“I was having these ‘turns’ and my family would say I had the devil inside me and I should pray.”
She continued to have regular seizures during her childhood as the condition continued to go unmedicated.
Problems at home arose and she opened her heart to teachers at her Fylde coast secondary school.
She said: “I told the school when I was 12-years-old, but they believed I was lying. They told me to confess my sins.
“They had met my parents and told me they were good people.”
She would come home from school and tell her mum she had had another turn. As the issues at home worsened, she was taken into temporary care and then went to live at a children’s home.
“It was quite hard for me being in a children’s home,” she recalls.
“I wasn’t used to being around so many people, interacting with them outside of school. I didn’t know how to socialise.”
At 16 an attempt was made for her to move back home, as Sarah “wanted it to work”. It lasted two weeks.
She had found a voice and it caused friction in the strict household.
She moved to another children’s home where she began living in a bedsit attached to the organisation.
At 16, she says she was given money to live on and pay the bills and shopping, but she felt alone.
“I found it very hard. I was managing OK on the outside, doing my shopping and the laundry and what have you, as well as trying to do my school work.
“But I started getting sent out of class a lot and I was suspended.
“I managed to get GCSEs in English, maths and music despite it all.”
All the while, her seizures were continuing.
It was around that time the doctor’s revelations about her medical condition changed her life.
She began volunteering at a vets and loved it, which positively impacted on her seizures.
“I was having fits less regularly because I was enjoying what I was doing, I found it quite relaxing.”
At 18, her money from social services was stopped as she entered adulthood but she was given part-time work at the vets where she stayed until she was 22.
By this point she had met future husband and she fell pregnant with daughter at 21.
She says she had checked with experts that it was safe to conceive with the medication she was on - sodium valproate - which later was revealed to cause birth defects and developmental problems in babies.
She describes her pregnancy as the “worst nine months of my life” as she was having seizures weekly.
Her daughter was born with partial hearing and her legs grew quicker than they should have done.
Sarah, who was unable to drive due to her epilepsy, gave birth to her son two years later.
She changed her medication while pregnant with her son and went seizure-free for nine months. He was born unaffected.
Sarah and her husband later divorced.
“The epilepsy kept us together to be honest,” she admits.
“He had to look after the children when they were growing up a lot when I was having seizures.”
She had sporadic contact with her parents over the years - she sent Mother’s Day and Father’s Day cards to little response - but their relationship was beyond repair. They haven’t spoken now for coming up to a decade.
When her son was 12, he found his grandparents’ address in his mum’s old address book and doorknocked them. Her mum called Sarah on the phone.
“We chatted for a while, she said what a lovely boy he was.
“But nothing has ever really come from that contact. Before that, while my younger siblings were at home I was seen as a bad influence. But from what I heard the family dynamic had changed. It was not the home life I grew up with.”
To make matters worse for Sarah, she developed arthritis, with the Tramadol she was prescribed exacerbating her epilepsy.
She managed to complete a degree to become a teaching assistant two years ago but she is currently out of work.
“Due to my seizures being so unpredictable and also being in a lot of pain from the arthritis, I’ve not been able to work.”
She is awaiting new medication which is hopefully going to help with the condition.
She now lives with her pet dog in a Blackpool flat.
Her fits now occur every four weeks or so and she wears a fall button with a direct link to Vitaline, a monitoring service run by Blackpool Council.
She is proud of her children and how they have grown up.
As time has passed, can she now forgive her parents for the lie she was spun?
“After reading through the bible as an adult and reading some of the parables about the devil, I can only assume that’s the scenario that was in their mind,” she reasons.
“But I can’t believe you could think that of a child, that the devil was inside them.
“How could they treat me that way?
“You love your children, you do anything to help them and I was shocked how I was brought up.
“I feel sorry for them. They have lost out - they have no contact with their grandchildren. My dad would have been proud of what fine adults they have grown to be.”
HOW YOU CAN HELP?
Sarah insists there needs to be more of an education of all disabilities, not only epilepsy.
Sarah added: “A subject like PSHE would be a perfect opportunity to discuss, especially hidden disabilities.
“It’s important that the message is passed to children, at the end of primary school and definitely in secondary school.”
To contribute to Epilepsy Action, you can donate £5 by texting PURPLE to 70500. This applies to the UK only. For more information regarding the charity, visit, epilepsy.org.uk/purple or call 0113 210 8800.