Joe experienced his first seizure in 2019 and since then has had focal and absence seizures more frequently, which has a big impact on his mental health.

On Purple Day, International Epilepsy Awareness Day, he shares how epilepsy is more than seizures.

Can you tell us how you got diagnosed with epilepsy?

In 2019, I became unwell while working a stressful job. Many assumed that the strange twitches, spasms, weakness, and fatigue I was experiencing were simply due to work-related stress.

One evening, when I arrived home from work, I felt an overwhelming weakness as spasms took over my entire body, and I collapsed, unconscious.

Thankfully, my mum was there to witness what turned out to be my first major seizure. She immediately called for help.

I remember opening my eyes to paramedics urging me to wake up and breathe, reassuring my mum that I was in safe hands.

I was medicated on arrival at the hospital, where I remained for weeks undergoing extensive testing. Eventually, I was placed on epilepsy medication, something I believe truly saved my life.

What started as a few weeks of investigations turned into months of further tests until doctors finally confirmed my epilepsy diagnosis.

Their explanation was brief: a basic list of dos and don’ts, and adjustments to my medication as my seizures evolved.

Initially, I experienced tonic-clonic seizures—the type most people associate with epilepsy.

However, over time, my seizures changed. I began having absence seizures, which make it seem like I’m daydreaming, along with myoclonic seizures, which cause sudden jerks in my arms and legs.

I also experience focal seizures, which affect specific parts of my body often making my face spasm or move in unusual ways.

The journey to understanding my epilepsy has been challenging, but with the right treatment, I’ve learned how to manage it.

It hasn’t been easy, but getting the right diagnosis and support has made all the difference.

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

I remember sitting in that hospital room after more investigations, hearing the doctors confirm it, and just feeling completely lost.

They gave me a list of dos and don’ts, changed my medication, and sent me on my way.

But no one prepared me for what it would mean in the long run, how it would affect my independence, my confidence, and even simple things like getting around or making plans.

There was fear too. Not just about the seizures themselves but about how people would react.

Would they see me differently? Would I be treated as weak or incapable? I worried about work, about my future, about whether I’d still be able to do the things I loved.

Over time, I learned to adapt. The right medication helped, and I started to understand my triggers and limits. But in those early days, it was just fear, frustration, and constant questioning.

In what ways has epilepsy impacted your life?

Epilepsy has changed almost every aspect of my social life. The most obvious is not being able to drink because of my medication.

Nights out feel different when you’re the only one sober, and there have been times when I’ve been turned away from venues just because I looked fatigued.

Bouncers assume I’ve had too much when I’m just exhausted from seizures. Trying to explain doesn’t always help, sometimes it’s easier to just go home.

Even the small things like taking a bath aren’t simple anymore. There’s always a risk of having a seizure in the water, so I avoid it, but I don’t have access to a proper shower either. Housing has been another struggle.

Stairs are a major barrier with my muscle weakness but finding an accessible place that meets my needs feels impossible.

Then there’s the benefit system, something I never thought I’d have to navigate.

Learning how to apply for support, prove my condition, and fight for basic help has been a draining experience.

Epilepsy isn’t just about the seizures, it affects independence, access, and even the way people see you.

It’s a constant balancing act, trying to live as normally as possible while working around the barriers in the way.

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

Depression has crept in more often than before.

Losing control over my own body has made me feel trapped at times like I’m constantly at the mercy of something I can’t fight.

It’s hard not to grieve the freedom I once had. Friendships have changed, socialising is harder, and not being able to do simple things like taking a bath without fear is a bigger deal than people realise.

The little things add up, and over time, they take a toll.

More than anything, epilepsy has forced me to manage both my physical health and my mental wellbeing.

Some days are harder than others, and the weight of it all feels overwhelming. But I’m learning to adapt, to advocate for myself, and to find strength even in the most frustrating moments.

Can you tell us how your epilepsy diagnosis has impacted your mental health?

Before epilepsy, I had my battles with mental health, but since my diagnosis, things have shifted in ways I never expected.

The link between seizures and mental health is undeniable, not just because of the emotional toll but because seizures physically affect areas of the brain that control mood, memory, and emotions.

There are days when I feel completely drained, not just physically but mentally. Seizures disrupt cognitive function, leaving me with brain fog, confusion, and even emotional instability.

Some days, I struggle to recall words or follow conversations, which only adds to my frustration.

The areas of my brain that epilepsy affects also impact my mood, making anxiety and depression even harder to manage.

What has helped you with your mental health?

I’ll be honest; I can’t say meditation or a wellness program did it for me. When my mental health started to decline, I was upfront with my doctor and asked for medication.

I was placed on antidepressants, and they help. We must be honest, not just with others but with ourselves too.

Beyond that, I’ve had to invest in therapy. I’m lucky to have a supportive family who can help with the cost of seeing a therapist, someone who can talk me through my emotions and help me understand them.

Therapy has been a space where I can process everything—epilepsy, anxiety, the loss of independence—and learn ways to cope.

I also believe in the power of small things. Taking a break, going for a walk, or exploring nature helps clear my mind.

More recently, I’ve found comfort in online support groups, just knowing there are others like me.

But I also realise that constantly seeing others struggle with the same challenges can be difficult. Keeping a bit of a safe distance has helped me manage my own emotions without feeling overwhelmed.

What would you say to others who have been recently diagnosed with epilepsy?

Don’t compare yourself to others, not even my story.

Everyone’s journey with epilepsy is different. Different medications, different doctors, different types of seizures, and different support systems.

The worst thing you can do is assume that just because something works for someone else, it should work for you. I’ve been there, and it only adds pressure.

Take your time to adapt. Lean on support from well-respected organisations like Epilepsy Scotland, and don’t be afraid to ask for help or question things along the way.

There are great communities online, and finding the right one can make all the difference.

Look for a space that feels right for you and don’t hesitate to reach out. You’re not alone in this, and support is out there.

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.