Epilepsy: ‘A neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain’ (Oxford Dictionary).
Sounds terrifying when you Google it, doesn’t it?
Epilepsy can turn up unannounced at any time, and while impacting approximately 600,000 people in the UK, it is a totally different experience for everyone.
However, I’m here to tell you that a diagnosis of epilepsy can be more of a friend than an enemy, and can even be used to your advantage. Here are 5 things I wish i’d known when I was diagnosed with epilepsy:
Diagnosis
August 2018. Wandering through a busy city on holiday one minute, lying on a hospital bed aching like I’d run a marathon the next. That was the start of my experience with epilepsy.
A diagnosis of epilepsy is a huge moment for anyone, whether you’re diagnosed as a baby, a child or an adult and it is important to remember that there is no correct way to feel. You may be angry. Confused. Scared. But it is your experience. So, ask all the questions you need. No matter how big or small. And take time to accept your diagnosis. In particular, I’ve found journaling, meditation and exercise hugely useful as a way to not only come to terms with my diagnosis, but also potentially reduce my chance of having a seizure. Being diagnosed was a scary moment in my life, but it is how you respond to the diagnosis that is the most important thing - it is about continuing to live a fulfilling life despite the diagnosis.
Talking to loved ones
It can be daunting when you first talk to loved ones about epilepsy. This makes sense because it makes it more real! But remember, it’s not only useful to have support from loved ones, but can also come in helpful if you have a seizure while they are present. Chances are, there will be some people who have fallen for the ‘seizure first-aid myths’ such as holding someone’s tongue with a spoon during a Tonic-clonic seizure. Or they may not understand other types of seizures such as Focal seizures or Absence seizures. Therefore, explaining your condition can help loved ones to support you, whilst also educating them on what to do if you have a seizure.
This was particularly helpful for me in my second week at university when I had a Tonic-clonic seizure in my lecture. Luckily, I had just explained my epilepsy to a friend who was in my lecture just days before, teaching me to always inform family and friends about my seizures.
Be sure to bear in mind that people will react differently. So never feel responsible for the different reactions of those around you. If you’re willing to speak up about anything concerning your diagnosis, you’re helping not only yourself, but those around you as well.
But for those diagnosed as a young person or adult, epilepsy will change your life. But not necessarily in a negative way.Alice
A wake up call?
I cannot speak for those who were diagnosed with epilepsy at an age young enough to not remember your life without epilepsy. But for those diagnosed as a young person or adult, epilepsy will change your life. But not necessarily in a negative way.
In my experience of having focal and Tonic-clonic seizures, it made me think, what adjustments can I make to my life which will not only benefit my epilepsy, but my life in general? Could I be getting more sleep? Could I be drinking less alcohol? Could I have more of an active lifestyle and consider a better diet? This won’t work for everyone, but definitely can’t hurt.
By turning epilepsy on its head, it is possible to see that you can use it to your advantage to adjust your lifestyle in a manner that will benefit you as you, rather than you as an epileptic. You don’t need to feel restricted by your diagnosis. You may not be able to drive anymore, or stay out as late with friends, or drink as much on a night out, but can you live without those things? Of course! Public transport or cycling: better for the environment and a great workout. Getting earlier nights and drinking less: you’re looking after your body, both as a person with epilepsy, and as YOU.
Knowledge is power
I wouldn’t recommend Googling a whole encyclopedia of epilepsy related jargon, but make sure that you seek out the knowledge you need to better understand your diagnosis. There’s a lot of jargon within the condition, which adult specialists are unlikely to explain. An EEG, a Freedom pass, VNS; all epilepsy-related yet complicated terms that you should learn about. Make sure you ask questions, ask for the full name of any acronyms, and do your own research through charity or NHS resources. Knowledge is power. The more you know, the better you will understand and be able to accept your diagnosis. Also, the more you know the better you can speak to loved ones about your condition.
Time is a healer
Over time, speaking up about your epilepsy, understanding any specific requirements you need at your school, university or workplace, and accepting your diagnosis will become easier. Take your own time to accept your diagnosis and the changes that it will make to your life. There is no correct way to feel, and no correct amount of time to feel in control of your epilepsy. Also, do not suppress any emotions through your acceptance process. It is normal to wonder, 'why me?' but with time, epilepsy will become a part of you and your character, rather than an overwhelming, chronic condition and you will see epilepsy as more of a life experience than your whole life.
I hope these 5 pieces of advice will help someone out there. Being diagnosed as a young person is a difficult experience to go through. However, by making some small adjustments, doing your own research and allowing yourself to move through the process of acceptance, it is entirely possible to use your diagnosis to your advantage and still maintain a fulfilling life.
While the Oxford Dictionary definition of epilepsy may still make it a terrifying condition at first glance, epilepsy, on a more personal level, is a diagnosis of a condition, not something that defines you.
