I didn’t know why I was uncontrollably sobbing – then came the diagnosis

The first thing I noticed was a metallic taste in my mouth. 

I was 14 and this taste just came out of nowhere, and could last anywhere from a few hours to a few days.

With no clue what it was, I put it down to it being that time of the month. 

Then, in April 2021, my granddad passed away. It really impacted me and caused a lot of anxiety to build up.

Suddenly, the metallic taste was just one symptom of many that came on at once: I started noticing shock feelings, like when you get a jump scare, and a sense of deja-vu.

I would notice it, then forget what triggered it less than a second later, all the time thinking: What have I just seen?

The crying started soon after. A favourite show or song tends to bring out a bit of emotion in all of us but whenever Demons by Imagine Dragons came on I would cry really, really deeply.

My family would repeatedly ask me what was wrong but I could only ever tell them that I didn’t know.

Eventually, they started to ignore it. Without any explanation for my weird symptoms, I acted as if nothing was happening.

It wasn’t until September 2021 when I was on holiday with my mum and sister that I had deja-vu, and a feeling like I was on a roller coaster with a wave rolling through my chest. The feelings were familiar by this point but I noticed they were going on and on.

When my hands and toes started tensing and tingling, I panicked. 

Mum came out, I sat down and then must have been unconscious – I remember waking up and being really confused as Mum told me I’d had a seizure.

We drove to hospital and I had another 15 seizures along the way.

It was actually a bit of a relief to get diagnosed with epilepsy.

After an MRI scan and an EEG – during which I had a seizure – I met my neurologist. She asked about shock feelings, deja-vu, the metallic taste, and mood swings, getting really angry or randomly crying. It was like she was explaining the past six months of my life. I finally understood.

For Sarah

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

I now know I have focal seizures. They are largely controlled by medication but it took a long time to get my dose right. 

Being diagnosed with epilepsy at 15 meant I lost a lot of friends. They thought my condition meant I couldn’t do anything anymore, and they were scared of what would happen if I had a seizure when we were out – so I just wasn’t invited. 

I understand it’s not an easy thing to process and yes, I’ve got this disability, but I can still do things like a normal person. 

One of the hardest things to deal with has been the mood swings. While my medication was being adjusted, I would get irritated really easily. It was like a devil hopped into my brain and took control of my body.

I’d ruin things in my bedroom, or I’d self-harm. Afterwards I’d look back and think, what the hell has just happened?  

The one phrase I came back to over and over again was: Don’t punish yourself, because this is not me – these are not the sorts of things I do.

I’ve found that reading, doing jigsaws and playing games on my phone really help me when I’m feeling anxious. My family are really supportive but they know when to give me space.

Another challenge is being unable to drive. I had to stop learning after three lessons because I had a seizure, and for my type of seizures, UK law requires that you’re 12 months seizure-free to drive.

A lot of people I know can drive now; I see them driving past my window while I’m isolated inside. My dad bought me a car for my birthday; looking at it without being able to touch it has really affected me. 

Today, I’m at college studying health and social care. Having epilepsy has made me want to work with people with the same condition.

I still suffer from a lot of social anxiety – I’ve become very shy and don’t socialise or talk to people much because of the experiences of being excluded I’ve had in the past. I don’t want to have to go through that again.