At age 20, Lauren was diagnosed with epilepsy after experiencing multiple seizures that led to a medically induced coma in September 2022.

Initially rejecting her diagnosis and struggling with medication side effects, she later discovered her condition was stress and exhaustion-induced. Read her story below.

Can you tell us how you got diagnosed with epilepsy?

I was diagnosed with epilepsy in September 2022 after ending up in status epilepticus.

I was working in a late-night bar and meant to finish my shift at 4am. At 1am I started to have a sore head and a bit disoriented.

Fight-or-flight mode had kicked in, and I did not know why. My boss thankfully let me away early, and when I got home, I decided to just have a cup of tea and “sleep it off.”

I woke up in ICU a few days later and it turns out that after I’d gone to sleep, I had gone on to have multiple seizures that would not stop, and I had to be put into a medically induced coma.

Before this incident, I had one seizure during lockdown that was written off as “everyone gets one” I never thought much of it at the time.

How did you feel when you were first diagnosed with epilepsy?

Truthfully, I was very adamant I did not, I rejected the idea, and I continually disputed what doctors were telling me.

Looking back, this was for a multitude of reasons, I was understandably not in the correct mindset after everything that had happened.

Suddenly, I was on a very high dose of medication at 20 years old after barely taking paracetamol my whole life.

Now being educated on epilepsy, it looks like I was experiencing post-ictal psychosis. I was not my ‘normal’ self and for the first time in my life was experiencing anger at myself, at the world, at everything.

As many people do, I had such misconceptions about what epilepsy is. I thought it was just going into a state of seizures due to strobe lighting and this did not resonate with me.

This was an ignorant and uneducated view on my part, and I now know my epilepsy is stress and exhaustion induced. This makes a lot of sense as at the time I was working most nights until 4 am while not sleeping during the day.

I had run as Scotland’s youngest candidate in the local council elections as well as almost lost my mum to a brain aneurysm all in the same year. If anything, I’m now surprised my epilepsy didn’t show itself sooner.

In what ways has epilepsy impacted your life?

I felt the weight of the word epilepsy when I was first diagnosed but over time it’s learning to live with it and finding out what works for you.

I’d say the biggest challenge is the medication. After being diagnosed, I was not used to any sort of medication and had to go through trial and error with them at first and it felt like more of a gamble on choosing what gave me the least side effects rather than what made me feel better.

Even now they can feel quite heavy some days, it can be difficult being only 22 and feeling exhausted after a pint or two on the rare occasions I do but it’s just the way things are.

What has been the biggest challenge you have faced since being diagnosed with epilepsy?

I find one of the most challenging things about being diagnosed with epilepsy is the stigma and lack of education surrounding it.

When I was diagnosed at first, in all honesty, I was (wrongly) ashamed and felt as though there was something wrong with me. I avoided telling anyone altogether and got defensive if asked about it.

This is due to the lack of awareness of what epilepsy looks like and how different it is from individual to individual.

Now it’s something I will happily openly discuss but the challenge still lies with what people think when they hear ‘epilepsy.’

All I can hope is that with the help of resources such as Epilepsy Scotland, more understanding and awareness can be spread.

Do you feel stand-up comedy has helped you come to terms with your epilepsy diagnosis?

After being diagnosed, I truly was in an awful place mentally. Coming to terms with everything wasn’t something that came easily. Making light of any struggles or hardships throughout life was something I’d always done.

Eventually, this was the only way I was able to remove any negative power I saw in the word epilepsy. Recovering from what had taken place, I went from always on the go to being in a bored slump.

While mindlessly scrolling, I came across applications for a stand-up comedy night for people who had some experience. I had always adored stand-up comedy and never knew how anyone began to get into it.

In my unusual mindset at the time, I applied and then continued to scroll and forgot about it. I received an email offering me a spot a couple of months later and had no idea what I had done or was doing.

I started scrambling for somewhere I could practice and that was the start of a very cathartic way of coping and healing.

Stand-up comedy has allowed me to “take the mick” out of myself and joke about my own experiences.

I went from being terrified of anyone knowing I had epilepsy to having now joked about it with hundreds of people.

Being able to make fun of myself and choosing to make people laugh about it gave me all my power back.

On a couple of occasions, people afterwards have told me that what I’ve said has resonated with them, this is great as a genuine, relatable understanding of epilepsy is rare, not to mention relatable humour on the matter.

What would you say is the biggest thing you have learned about yourself since living with epilepsy?

I have learned that I need to be a little kinder to myself. (Everyone should be a little kinder to themselves). Applying this though is harder than it sounds.

My seizures being correlated to stress means that getting myself worked up over anything often leads to a spiral of becoming ill.

I have had to remind myself not to be so hard on myself. I found it very difficult when all my plans were changed at the time of being diagnosed.

Also, I didn’t cope well with the unpredictability; I have had to learn to take one day at a time and that not everyone’s journey is the same.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.