The Silver Lining to Living with Epilepsy
The silver lining to living with epilepsy might sound like a mystical creature, but it does exist! Finding this silver lining and getting to the point of sharing my epilepsy journey has taken a long time. Not forgetting a hell of a lot of courage. I have gone through a lot both mentally and physically, but here I am, standing stronger than ever.
First of all, let’s understand a bit about epilepsy
Epilepsy is a neurological condition where seizures are caused by a surge of electrical activity in the brain that interrupts normal brain waves. There are lots of different types of seizures, meaning epilepsy is completely different for everyone. There is no cure, only attempts to manage and control seizures, which is why life with epilepsy is a journey. There’s no denying it, epilepsy has shaped who I am as a person and it’s taken 6 years to realise it actually brings some positives.
The different types of seizures might surprise you. Sometimes you might not even know someone is having a seizure, typically absence seizures. Other times someone might have a tonic-clonic seizure where consciousness is lost and they fall to the floor.
I am by no means an epilepsy expert, so please go to Epilepsy Action more in-depth information on all things epilepsy.
Diagnosis brought pain, not peace
For some people, a diagnosis brings peace, relief to finally know what’s going on. For me, it was like a slap in the face, a feeling of betrayal by my own body. I’m sure many people with a chronic illness can relate, the usual deal is if you look after your body, it will look after you. But some of us get a dodgy exchange rate. Imagine getting a life-long illness in return for looking after your body.
The first few seizures I had are non-existent in my mind, those memories have probably been blocked out as your mind does sometimes. What I remember vividly is the day I got my diagnosis, a lot of uncontrollable tears were shed that day. At age 16, being diagnosed with a chronic illness was a far cry from I was expecting in my last year of high school.
Relative to people who’s lives are changed completely, with around 3 or 4 seizures a year my epilepsy isn’t bad at all. Yet the tonic-clonic seizures that attack me are devastating and there’s no getting used to it. Who could get used to blacking out, waking up in complete distress with no memory of the last hour? You can probably see why it has taken a long time to find the silver lining to living with epilepsy.
But it’s not all bad! At around 19 years old I was 1-year seizure-free, something I can’t wait to achieve again. I got my driving license, something I would’ve done at 17 otherwise (in the UK driving is only allowed if you are 12 months seizure-free). There were even talks of getting a car. Life can easily be lived normally with the right seizure treatment. Yet my invisible enemy reared its ugly head again and my seizures returned.
It’s 100% possible to ignore a chronic illness
For years I ignored the fact I had seizures. I took my tablets every day, had the occasional hospital visit and of course a few sporadic seizures. The denial was real. It’s crazy to think this went on for 6 years straight, but somehow it did.
Ignoring an epilepsy diagnosis is actually pretty simple. You sleep off any seizures, cry a little, don’t talk about it, then go about living in denial as normal.
This is how I lived life until I couldn’t ignore my epilepsy any longer. When I spent 3 months in Kenya, I took malaria tablets which resulted in 3 seizures. A whole years worth in the space of 12 weeks. The definitive turning point was 4 weeks after returning. I had a seizure in the house alone, which is the worst experience of my life.
Acceptance is the way forward
After such a traumatic seizure-related experience I was forced to face my epilepsy head-on. This set me on a path to acceptance which really was a blessing in disguise. Acceptance has the potential to be key to a lot of things in life. It was accepting that I have a chronic illness that allowed me to joke around and have in-depth conversations about epilepsy.
After years of denial, how did I get here?
Step one was hitting rock bottom. My mental health plummeted and I increased my medication. Upping the anti-seizure medication felt like a defeat after hating taking tablets daily in the first place.
Step two was talking. I went to counselling for a few weeks and it transformed my mental health. Accepting the reality of epilepsy opened the door to building a more positive relationship with my health, clearing the smoke to see that silver lining. The talking has never really stopped, it is so liberating. Talking was the only way of reaching the point of sharing my epilepsy journey in the first place.
A shift in mindset changed my life
As cliché as it sounds, positive thinking is one of the most powerful tools we have. By making peace with my epilepsy, positive changes appeared. I was happier, all of a sudden I was getting interviews and job offers, even winning a scholarship to an online course that was WAY out of my budget. You really do get back what you put out.
One outlook I implement and urge anyone else with epilepsy to do the same, is not dismissing that having a seizure is rough. But most importantly, remembering that epilepsy isn’t too well understood. It is completely possible that your last seizure could quite literally be, the last ever seizure you have. Even if it wasn’t, I try to class any new seizures as being one step closer to seizure freedom, because if it’s going to happen anyway, I’d rather sooner than later.
The silver lining to living with epilepsy
In fact, there’s a few of them (I was very surprised), the best one being the change in mindset that has changed my life. Here’s the rest of them:
- Not being allowed to drive has saved a hell of a lot of money. I’ve been able to go on holiday instead of paying for (very overpriced) car insurance.
- Having a chronic-illness kickstarted my journey to acceptance which will only ever make life better. If you need a bit of inspiration for acceptance I recommend reading The Surrender Experiment: My Journey into Life’s Perfection. It’s a great book showing the huge potential of practising radical acceptance.
- An appreciation of each and every seizure-free day. This makes any other normal bad day, a good one!
- The mechanisms used to help process and accept my health are transferable to other parts of life. I’m armed with different coping mechanisms ready for what life is going to throw at me.
- A new type of openness has come from feeling failed by western medicine. I now welcome holistic medicine into my life and try to follow the ketogenic diet and try new things recommended by eastern medicine (I consult my consultant before making any changes).
Epilepsy isn’t great, but it’s not all bad either
As you can see, the journey with epilepsy is not smooth sailing, and this is my journey alone. Each person has a different experience with epilepsy, there is very little consistency with this illness. But it’s still possible to find some silver linings to living with epilepsy. I’m sure there’s many more than the few I’ve mentioned.
If you are living with epilepsy, I believe it is possible to find a light at the end of the tunnel even if it isn’t always clear (there are times when I can’t see it myself). Personally, it helps to not compare myself to others. We are each on our own journey, all working towards different goals. For some of us with epilepsy, this might be reducing the number of seizures, getting the right medication that works for you or just making peace with your diagnosis.
As much as epilepsy broke me down into millions of pieces over the years, I built myself back up stronger than ever. Strength is another thing I have to thank my epilepsy for, because without it I wouldn’t be the strong woman I am today.
Until the next time I wear my heart on my sleeve,