What’s life like for young people with epilepsy?

We hear from Jemima, who tells us how she learnt to live with epilepsy – and how she refused to let it dominate her life.

Mental health and wellbeing
By Parent Zone ·

Jemima

Jemima has recently finished school and is looking forward to going travelling next year.

How I came to terms with my epilepsy

When I was eight I experienced my first epileptic seizure, a diagnosis I was eventually given at the age of 13. Epilepsy affects around 600,000 people in the UK and brings various difficulties, At 18, having grown up with epilepsy, I have learned how to deal with them – but navigating teenage years with a condition that affects everyday life can be extremely confusing and uncertain, creating certain obstacles that most people do not have to face. But learning how to adapt to deal with these problems does become a lot easier.

Epilepsy is a common condition that affects the brain and causes frequent seizures: bursts of electrical activity in the brain that temporarily affect how it works. I have focal epilepsy, or partial epilepsy, which means my seizures are caused by overactivity in a isolated part of the brain and during them I experience a loss of awareness, odd sensations in my body, incontinence, a lack of ability to speak or walk, perceptual disturbance, and a sense of fear or intense anxiety. This is very different from the more severe types that most people think of, where the person is unconscious and shaking. General perceptions of epilepsy are often very different from what the majority of people with diagnosed epilepsy experience most of the time. For example, only 3% of people have seizures caused by flashing lights – something that most people directly associate with seizures.

Although my seizures were fairly mild in comparison to the more serious forms, fully accepting my diagnosis was something I found really difficult. For years I was in complete denial. I just wanted to ‘be like everyone else’ and so I rejected the fact of my seizures. I felt huge amounts of guilt every time I went to the doctors because I really didn’t believe I had epilepsy and every time a family member tried to speak to me about it I would close down the conversation immediately.

Coming to terms with a diagnosis that affects your everyday life, especially when wanting to be ‘normal’, is challenging, to say the least. Deciding to start medicating my epilepsy was a huge part of this process, because it was validating its existence. I was really scared about beginning my medication but, once I had, my everyday life became far easier. Luckily my medication worked almost immediately, meaning that managing my epilepsy improved a lot.

Perhaps more importantly, my emotional management improved – I was forced to accept my epilepsy and deal with the emotional weight. Finally deciding to open up about how I felt about this diagnosis allowed me to accept the reality of it. This felt freeing and provided me with a sense of autonomy and control I hadn’t had before. I think that talking about the emotional difficulties I was having with my epilepsy was key in assisting me to accepting it and making me handle it so much better. My seizures felt less like some kind of injustice that was happening to me and more an aspect of my life that I was now capable of dealing with emotionally.

Depression in people with epilepsy is very common. It may be constant and severe or change over time. Before and after a seizure I would feel really anxious and depressed. Recognising this and knowing how common it can be helped me feel better about it. This didn’t necessarily change how I felt, but it made me realise this was a natural aspect of my seizures and didn’t mean there was anything ‘wrong’ with me as a person.

Navigating this alongside teenage angst and growing up made it all the more challenging. I was referred to a psychologist in my hospital and I found that talking to someone I didn’t know helped me come to terms with the emotional side of my epilepsy. I could blurt out everything I was feeling without the fear that someone was going to chase me up about it or tell other people.

Having talked to someone more objective, who wasn’t part of my day-to-day life, I was able to slowly open up to my friends and family about how I was feeling and dealing with my epilepsy. There are loads of groups that you can speak to such as the Epilepsy Action Helpline. Creating a really strong support system has been an integral part of how I deal with epilepsy emotionally and practically.

Things that are central to most people’s teenage years – late nights, alcohol and recreational drug use – can all trigger fits. Strong support from my friends became really important. Feeling safe is vital to help ensure you’re not doing things you don’t feel comfortable with. Knowing that your friends know what to do in the case of a seizure meant I felt more comfortable going out.

Epilepsy varies a great deal from person to person and ‘knowing’ your seizures and understanding what YOU feel good about doing is essential, as people around you may be doing things that are unsafe. Creating boundaries and limits is critical to looking after yourself in these particular situations.

When it came to drinking or taking drugs, it was important for me to research quite thoroughly the substance and what effects it might have on my type of seizure and my medication; this allowed me to make informed decisions. I found talking with my doctor about it quite uncomfortable and a bit pointless so websites such as healthtalk.org in the section ‘epilepsy in young people’ were really useful.

Making these more informed decisions and knowing what I did – and didn’t – feel comfortable doing meant I could stay as safe as possible while still wanting to go out with friends.

Having navigated my teenage years with epilepsy, I am now one year seizure-free and hope to be driving by the end of the year. This condition can form a large part of life, especially if seizures are severe and/or often, and to help you ‘get on’ with all the many other parts of your life, it helps to be open about how you’re dealing with your epilepsy, and create a really supportive group of people around you. Some people grow out of this condition in adulthood; for others it’s lifelong; either way, working out your own ways to manage your seizures allows epilepsy to be only an aspect of life rather than the dominating feature.

Finding treatments that work in lessening or stopping seizures altogether can be a painstaking process. But learning how to support yourself emotionally is one of the most important steps you can take to look after yourself.