Woman ‘told her husband should leave her’ over rare condition

A mum claims she was 'told her husband should leave her' after she was diagnosed with a rare health condition.

Charlotte Callister, from Sefton, claims people have also told her that she’s 'a waste of life' and 'she shouldn’t have children', all because she has epilepsy.

The 30-year-old hopes sharing her difficult experiences will help reduce the ‘stigma’ and ‘lack of awareness’ about the condition that affects every part of her life.

Charlotte said: "I have had my engagement ring stolen during a seizure. I've had people telling me I shouldn't have kids, I'm a waste of life, I should have died, my husband should leave me, I'm guilty of child abuse because of my seizures.

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"I've dealt with some really ignorant questions, ranging from things like my sex life to whether I should be allowed to use a computer.

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"I have epilepsy but epilepsy doesn’t have me. That doesn’t mean it doesn’t affect certain areas of my life, but I might have to do them differently.

"It’s about saying ‘if I want to do that, how can I do it in a way that’s safe for me?’"

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Charlotte was first diagnosed with epilepsy at 12 years of age. Since then she has suffered from seizures multiple times a month.

She has both tonic clonic seizures (losing consciousness, muscle stiffening and jerking movements) and absence seizures (brief sudden lapses in consciousness).

They tend to be brought on by stress, lack of sleep and sometimes her menstrual cycle. Though, sometimes she has no trigger.

Her absence seizures can last anything between 10 seconds to an hour and they happen daily.

While, the tonic clonic seizures, which tend to cause most physical damage, happen sporadically.

Charlotte Callister from Bootle underwent IVF to help her have a baby

Charlotte says that her condition affects almost every aspect of her life.

She said: "I am passionate about raising awareness because so many people have epilepsy in the UK, and yet still there is so much stigma and lack of awareness about the condition.

"I would particularly like people to understand how much epilepsy affects every part of your everyday life. You don’t just have a seizure and move on.

"It affects your confidence, mental health, independence, parenting, conceiving, relationships, work life.

"You don't realise how much you use your tongue for example, until you have bitten it during a tonic clonic seizure then it swells up to the size of your mouth and you can’t talk, swallow your own saliva – let alone eat."

Her condition has meant that she needed to leave two different universities and she was told she couldn’t pursue her teaching career.

Charlotte said : "I originally wanted to be a primary school teacher. But I was told that, due to my epilepsy being uncontrolled, this was not possible.

"I have had to leave two jobs due to needing too much time off because of seizures.

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"Between 2013-2019 I was not able to work. I went through a court appeal to gain PIP benefits in 2018 which severely impacted my seizures, mental health, confidence and financial position.

"In November 2019 aged 29, I managed to secure myself a Digital Marketing apprenticeship with my local authority, Sefton Council, which has been amazing so far."

Charlotte had IVF and got pregnant on her second cycle – but even the happy news of a baby brought out ‘ignorance’ in some people, as they told her she was ‘guilty of child abuse’ because of her seizures.

Friday, March 26, marks Purple Day, the global day for epilepsy and a chance to 'redress the balance.'

To mark the day, Charlotte is sharing her story and helping raise money for Epilepsy Action.

Charlotted added: "I have been fundraiser for Epilepsy Action for many years, as they gave my parents great info sheets when I was first diagnosed.

"My husband has used [the] website for help when we first started dating.

"The health-e mum to be section was really helpful to me when pregnant too. "