West Sussex woman, 47, tells of her 'shock' at being diagnosed with epilepsy

"Everything changed in an instant,” said Laura Bennett. She lost her driving licence, independence and peace of mind.

Laura, from Pulborough, is one of around 2,500 people who are diagnosed with epilepsy every month.

She has spoken out about her condition to help mark international epilepsy awareness day – Purple Day – (today March 26).

Laura’s problems started when she began having what she now knows were focal seizures. “I started to get strange episodes of really strong deja-vu several times, which started in the summer of 2022. I didn't think too much about them. Fast forward six months and I was sitting in front of a consultant about a knee injury at a hospital half an hour's drive from home. I had a similar episode as I was sitting in front of him, which I now know to be a focal awareness seizure.

“I drove home feeling strange and tried to eat lunch. I kept feeling very peculiar. Previous episodes had never left me feeling like this before. I went to the bathroom and the last thing I remember is calling my husband upstairs. The next thing is glimpses of being in an ambulance, in a hospital bed and being unable to speak.

“I had experienced a full tonic-clonic seizure. I was unable to speak for eight hours and I was kept overnight following a CT scan, which I don't have any memory of. I was shell-shocked.”

Laura says the loss of independence was a major factor in the way her diagnosis affected her mentally and emotionally, especially because of the phase of her life she was in. At 46, feeling everything had changed in an instant, was a total shock.

She also felt like she wasn’t given enough information which instantly made her feel in the dark about her condition. Losing her licence and being unable to be in a kitchen or bathroom at home on her own, instantly stripping her independence, to need to rely on others, had an impact on her mental health.

“At the time, I wanted a reason why, even though I know now I can't have a reason. What I should have had is information, signposting to support or, knowing who I could speak to at least, where I could go,” says Laura.

Connecting with people who have had similar experiences and learning more about the condition has been massively helpful for Laura when dealing with the mental impact of her diagnosis.

She says this has given her the strength to start leaving the house, rebuilding her confidence and sense of independence. This started with simple things such as walking the dogs a bit further each day, for a little bit longer.

Taking a ‘day by day’ approach has been key, she says, when it came to accepting how getting an epilepsy diagnosis at her stage in life had changed her everyday routine, including her work.

“Initially, after my diagnosis, I would still try to do things in the same way as before. For example, I tried to do a test to brush up on some additional skills and every time I tried, I would instantly forget the questions, I would get a huge headache, an overloaded feeling, and I would have to lay down for the rest of the day. I would try again and again, each time it would happen. I would continually get frustrated,” says Laura.

“It's so important to understand your limits and, in my case, I realised I was physically making myself ill, stressed and upset by not being able to do things. It is hugely important to take things step by step. Not to be too hard on yourself and to let yourself have the odd down day too.

“I'm grateful, touch wood, that my medication is helping me, and apart from the odd bad day, it is working. I have tried to stop thinking about the what-ifs and the whys. I’m one of the lucky ones, and I know that.

“I have changed how I work. I now work part-time, I'm not so hard on myself about not being able to do things any more, and I accept the limitations that I previously didn't have. I try to manage my stress levels and do things such as take the dog for a walk for fresh air, plug in my headphones and go to the gym when I need to clear my head.

“I’ve gone through a process of denial, grief and acceptance – the full spectrum of emotions. But you come out stronger on the other side.”

Epilepsy Action spokesperson Chantal Spittles said: “An epilepsy diagnosis can be devastating. It can make people feel as though their independence has all of a sudden been taken away, their work opportunities slashed, their balance shaken.

“Learning how to manage an unpredictable condition such as epilepsy can be a tough path, with many ups and downs. But with the right treatment and support, things can get better.”Epilepsy Action offers support through information and a helpline which can connect people with similar experiences, and by campaigning for better services.

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“This starts with better awareness,” said Chantal. “We have been told by people with epilepsy that making sure everyone understands what the condition is, and how they can support, is the number one thing we can deliver, because it has such an impact on their wellbeing, and it makes them feel less alone.

“That is why, this Purple Day, we’re asking everyone to take just a small step towards people with epilepsy: learn more about the condition, what to do when someone has a seizure, make them feel like they won’t be judged or stigmatised. Be an ally, as they learn how to manage their epilepsy one step at a time, day by day.”