Epilepsy can creep into every aspect of your life. It can flip your world upside down and change your lifestyle before you even know what’s going on. When I was diagnosed it really felt like my world had been shaken. I now had a chronic illness and there was nothing I could do about it.
Epilepsy has been with me 8 years now, a third of my entire lifetime. Yet it feels like I’ve been having seizures all my life. Almost as if epilepsy and seizures have always been a part of who I am.
Before I had started having epileptic seizures, my life was normal and I was healthy. I had nothing else to contend with other than the usual things you face growing up. But then when I started having tonic-clonic seizures at age 16, I was then deemed chronically ill. The evening of my diagnosis I took my very first anti-epileptic drugs (AEDs) – the first step on my new journey. Epilepsy had changed my lifestyle in an instant.
Being diagnosed with a chronic illness can make you feel like you’re drowning. Especially if your whole life suddenly becomes focussed on your illness alone. This is completely understandable and as someone who has done this, I get it. It’s okay to get lost in the chronic illness community. But if every single aspect of your life becomes about your diagnosis, are you letting epilepsy take over your life?
The Chronic Illness and Epilepsy Community
When I found the epilepsy community online I couldn’t believe it. I could finally speak to others who were going through the exact same thing as me! Even though epilepsy is one of the most common neurological disorders in the world, I’d never known someone with epilepsy. Either that or, like me, no one spoke about their seizures. After going so long without ever speaking to someone else with epilepsy, it’s an understatement to say I was relieved to find others like me.
The online chronic illness community can be an incredible space. You don’t feel alone and generally, people tend to support each other. You can help others solve problems you’ve already gone through, and others will do the same for you. The chronic illness community also provides space to vent to people that really understand what you’re going through. I know through personal experience how much of a relief this can be.
Speaking from my experience, the danger with the chronic illness community, is that there can be, understandably, a lot of negativity. When this negativity intertwines with the focus on your new chronic illness, it becomes all-encompassing. Adding any negativity into a rough patch that you’re already going through with your health, is the last thing you need.
It’s easy for epilepsy to dictate your life
Epileptic seizures can happen anywhere, at any point for a variety of reasons – or no reason at all. An epilepsy diagnosis can mean that your independence takes a hit. This is no surprise because your day now has to be organised around keeping you safe from your seizures. Organising your day around safety isn’t really a second thought unless you have a chronic illness or long-term health condition.
On a more long-term scale, epilepsy impacts your lifestyle in many different ways. Career options are narrowed because you are excluded from many professions. Socialising changes to suit your health and you might not be able to go to certain events anymore. On top of this, epilepsy anxiety is real. When you’re anticipating another seizure, the last thing you want to do is socialise. It’s no surprise that some people lose friends now that you can’t be at every social event anymore. For the record, you’re better off without people like that in your life.
Even if your ability to socialise isn’t impacted, anti-epileptic drugs (AEDs) used to control seizures can sometimes infringe on mood. Some drugs are notorious for this and can easily plunge some people into depression*. Unsurprisingly low mood and depression couldn’t be further than what you need as an epilepsy warrior,
Your independence can be altered in a variety of ways. In the UK, you have to be 12-months seizure-free before you’re allowed to drive. So, for now, I’m always reliant on someone else. Be that those operating public transport or someone dropping me off and picking me up. As someone who has aspirations to travel the world and passed my driving test 6 years ago, this can be incredibly frustrating at times.
But I still remind myself that life can be lived to the full – in a way that suits me. I don’t have to let epilepsy command my lifestyle, and I won’t let it.
When you’re going through a rough patch with your health, this can be difficult to remember. Try and look back at everything you’ve achieved in life so far. Achievements don’t have to be setting a world record or anything crazy like that. If you think about it simply getting out of bed when you live with a chronic illness is impressive on its own.
We can all still have our dream life if we want it. When you have epilepsy it means you face an extra challenge (to put it lightly). Life with a chronic illness can be tough, but it really does prepare you for anything.
If you can pick yourself up and carry on with your life after recovering from a seizure, what else can stop you? Life with epilepsy puts everything else into perspective, because if you can live with seizures, what’s a little set back on your path to your dream life? Even if that dream life has been altered to suit your reality.
You are not your epilepsy
What you are: A living, breathing human being with passions, desires, skills, intelligence, love, hobbies etc.
What your epilepsy is not: You.
Forget about your seizures for a minute and think about what you enjoy, what’s your passion? Your goals and your dreams? You can still have all of this, but maybe not in a conventional way. Maybe you’ll find alternative ways to do things, because you have epilepsy, epilepsy does not have you.
Epilepsy doesn’t have to dictate your life if you don’t let it. Living life with a seizure disorder only makes you more of a resilient and dynamic individual. How could you not be after living life with epilepsy?! Your life might not be what you expected, but neither is anyone else’s! Most importantly, you’re still here, and if you’re reading my blog, you’re probably still fighting too. It’s still possible, and always will be (with the right mindset), to find new ways to do what we love and to carve out our lives in the way we want. Like me, you might not be where you want to be right now, but you’ll get there somehow, with or without epilepsy.
If you believe you are not your epilepsy, post a selfie on Instagram with the hashtag #Iamnotmyepilepsy. Don’t forget to share in the caption about how you haven’t let epilepsy stop you doing what you love. Make sure to tag @thehappysista so I can see your post!
Until next time
*If you’re struggling with your mental health take a look at Mind, the mental health charity, for some support and guidance.