I want to build on my previous post and discuss how epilepsy actually changes your life. Because it's not just the seizures. Seizures are undoubtedly awful, and something that we strive to stop. But once you're "seizure free" doctors can just push you away, like you're all good now - bye! When in reality, epilepsy has wormed it's way into pivotal parts of your life, and even your identity. These deserve to be treated too. Awareness and education of epilepsy holistically is ne

A diagnosis of epilepsy can mean a complete change of your life, for life. For me, nothing has been the same since, and I’ve adapted around it. But there’s healthy ways of coping with it. And I wanted to group those under three core areas: You’re allowed to feel it, you don’t have to pretend everything is OK. There’s a difference between being negative and letting yourself process your emotions towards something that is a huge deal. Lean on what you can control, and leverage

The one thing I know about people with chronic illness (including epilepsy) is that resilience becomes a core trait pretty quickly. People (those that see the impact of epilepsy on me) ask “how do you keep going?” and my answer to that is in this post. Obstacles and challenges are a given in life, but success is not. Motivation can be so hard when you’re struggling, and for me I focus on three things: My “why” consistency with small actions matters more than one day of major

Following my post on rebuilding confidence after having a seizure in public, I wanted to make a post about rebuilding confidence following diagnosis. Because being diagnosed with a potentially chronic condition can change how you feel about yourself. Your capabilities, your independence, your ambitions, the list goes on. We evolve over time, confidence isn’t static. Epilepsy can also be so unpredictable, but owning the label and focusing on what I can control has helped me fe

People with epilepsy are 2.7x more likely to have ADHD. I've wanted to explore the relationship between epilepsy and neurodiversity. The more I've read, the more I realised there are so many connections that aren't widely talked about. So I decided to start digging into the research. The first topic I wanted to cover today was the link between epilepsy and ADHD. Something I found interesting is that symptoms like inattention, forgetfulness or difficulty concentrating aren't a

Like many people, I struggled with denial after being diagnosed with a long-term/chronic condition. For years, I was told: “you need to learn to accept epilepsy”. So I focused on destroying denial. I thought if I could just stop pretending everything was okay, stop wishing epilepsy would disappear, stop pretending that I’d never have a seizure again... Then maybe I’d finally have accepted it. But the more I pushed it away, the less achievable acceptance became. It’s only rece

This feels like the most vulnerable post I've done, and I can’t believe I’m actually writing it. The overwhelming majority of you selected a love letter to my epilepsy when I put out a poll. A few years ago, my therapist asked me to write a letter to my epilepsy. At that point, the letter was more like hate mail. Since then it looks different, and I’ve chosen to turn it into a love letter. Dear epilepsy, I spent years wishing you’d leave. But instead... I’ve learnt to live be

Here’s how. From a girl who has it. Have you ever felt awkward or uncomfortable when someone tells you they have epilepsy? Or are you someone with epilepsy who wants someone to understand how to support them? I’ve seen people react in a million different ways over the years. But the more “complex” side of support is knowing what to do next. It isn’t actually complicated. It’s as simple as being curious, actively listening, being proactive, and showing empathy. Here are some o

For years, I believed that if I did everything "right", I'd stop having seizures. That’s what the doctors told me. That’s what my family thought too. Sleep well. Eat well. Exercise. Take my medication. Avoid alcohol. When I still had seizures, it felt like I'd failed. I felt like I’d maybe not complied with that equation. What I eventually realised was that I'd been measuring success by the wrong outcome. Those habits didn't guarantee seizure freedom, but they changed how I f

One of the first questions I asked was: "why?". I was given a diagnosis of epilepsy, told I needed to take medication, but no one was telling me why it was all happening. For me, and 50% of people with epilepsy, we will never find out what caused our epilepsy. And it's not just that knowing the cause = knowing how to treat. It helps you understand yourself. It helps you explain to other people. And without that answer, you can feel so lost. For me, after all these years, I've

Seizure first aid can save lives, so here’s some myths we need to bust to protect not just the person with epilepsy but also the people around them. People have made dangerous mistakes with me during seizures. Restricting someone can hurt you both. Putting your fingers in someone’s mouth can result in injury (been there!). I was also given diazepam via iv when I didn’t need it. And sometimes it doesn’t even make sense to give to someone having a non-epileptic seizure. Disclai

When you get diagnosed with a confusing chronic condition as a teenager, you're bound to make some mistakes... I've learnt the hard way with all of these! Wasted time, energy, and worst of all... Seizures. The pic is a re-enactment of me pretending I'm innocent when my mum asked me if I'd been following the rules and not pushing my limits lol. I was uneducated about epilepsy when I was diagnosed. These are the mistakes I made and how I’d avoid them. One I didn’t tell anyone I

The question I kept asking myself: Will it ever get better? Because epilepsy wasn’t staying quiet. Even if I wasn’t having a seizure, I could still feel the side effects. After years of underwhelming doctor’s appointments, I realised I’d been asking the wrong question all along. Maybe my epilepsy wouldn’t be “cured” and seizures could return at any minute, but I didn’t need to wait for that. Changes in my life that I’d made for epilepsy were actually ones that benefitted me i

Seizures and epilepsy are one of the longest documented conditions. I’m talking all the way back to 2500bc!! In 400bc, hippocrates noted in his “on the sacred disease” that epilepsy is not caused by angry gods, and he even accused healers who gave epilepsy this “sacred” status were fraudulent. The text stated that the brain was the source of the disease. And while the understanding of what epilepsy is and how it is perceived has changed over time, somehow some myths and consp

When asked "how do you tell your partner/someone you're dating about epilepsy?" I now feel like the question should be "what do you tell them?". After 15 years and now sharing it on the internet, I feel like I can tell anyone that I have epilepsy. But telling a partner how this truly impacts me wasn't something I'd even thought about until recently. And it's not just about me now. It's a partnership. Epilepsy deeply impacts me and therefore is bound to impact him. It requires

After struggling to even get in the door to university, I didn’t want to stand out when I got there. So it’s safe to say that I made a load of mistakes. And if I could go back now and do it all over again, I’d make a few changes! And if you can choose just one of these it would be to talk about it. That’s how you succeed, how you build closer relationships, and how you make life better for people with epilepsy. I went to university without embracing what epilepsy meant for me

I feel like this concept is almost as complicated as epilepsy itself. The constant back and forth between what feels like acceptance and you wanting to have what feels like a “normal” life. Instead of thinking you can only feel one or the other, the reality is accepting you can fluctuate constantly between both states - and that is OK! Give yourself some grace. Chronic illness doesn’t (usually) stop and it doesn’t (usually) stop changing either. I didn’t realise that both cou

One thing has taken me from being isolated and alone to feeling purposeful and whole. And that is community. Not just any community: The epilepsy community. This wasn't initially why I started talking about epilepsy, but it's been one of the most impactful outcomes of it. The friendships feel immediate, bonds feel stronger than I could've imagined, and the level of understanding of so much of my life. Not just the bad parts or the bad days that come with epilepsy. They're her

The dilemma your manager doesn’t even see… epilepsy is just one of many conditions where you have good days and you have bad days. Not just from a symptom perspective, but from a mental and emotional one too. Some days you feel confident enough to ask for the support you need. Other days you’re frustrated that you can’t do something that would be easy for others, or that you have to ask for an accommodation. This post is to the managers and employers who can’t see or experien

Try these tools instead of trying “harder”. Both seizures and anti-seizure medications can have an impact on memory. It can feel frustrating and agonising when you can't find the word you're looking for, or you forget the name of someone you've spent years working with, or you don't know if you've taken your meds or not. This can add additional anxiety to an already anxiety-inducing condition. But I've realised a couple of things: Everyone has lapses in their memory! It's not