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'My epilepsy diagnosis gave me impetus to achieve as much as I can to prove all the naysayers wrong'

Monday is International Epilepsy Day. Ailbhe Benson (27) reveals her personal journey with the condition that affects over 37,000 people in Ireland.

Ailbhe Benson

MY EPILEPSY JOURNEY began in the dentist’s office. The nurse was showing me braces and the next thing I know I’m waking up in an ambulance. I had experienced a tonic-clonic seizure and they couldn’t get me to come around afterwards.

It took a full year, engaging with private rather than public services, another tonic-clonic seizure and hundreds of what I know now to be myoclonic seizures (jerks of the limbs) until I was officially diagnosed with Juvenile Myoclonic Epilepsy, which is a lifelong form of epilepsy.

Wanting to keep on swimming

My biggest concern at the time related to when I could get back into the pool. I had been competitively swimming since the age of eight. At that point I was training seven times a week and competing at a national level.

Luckily, my neurologist left this decision to my swimming coach. She was happy for me to continue training and competing as normal. She figured that there was always a coach on the bank to keep an eye on me and plenty of strong swimmers in the pool who could drag me out if necessary. I cannot express how thankful I am to have had somebody so pragmatic and empathetic to my situation on the receiving end of my diagnosis disclosure.

I truly feel that her reaction shaped the way I perceive my own epilepsy and, at that impressionable age, made me believe that nothing would ever be beyond my reach as a consequence of my epilepsy.

Controlling my seizures

shutterstock_356016542 For this year's International Epilepsy Day (February 13th), Epilepsy Ireland is focusing on awareness of the condition in the workplace. Source: Shutterstock/Chinnapong

I am extremely lucky to say that my epilepsy has always been very well controlled. However, I am very aware that there are people suffering from more severe forms of epilepsy that have a much more pervasive impact on their lives. Therefore, my account is merely personal to my own experiences.

As long as I religiously take my medication, my seizures remain under control. When I tell others about my epilepsy, many automatically assume that I must have regular seizures. In fact, the majority of individuals manage to get their epilepsy under control using anti-epileptic drugs.

I have suffered from numerous medication-related side effects. Indeed, the first medication I tried caused me so many problems that despite the fact that it was keeping my seizures under control, I ended up having to be weaned off it and put onto a different drug. I am now on Keppra, a drug that has a notorious reputation for mood issues, but I find that taking vitamin B6 keeps the “Kepp-rage” at bay.

It hasn’t held me back

Perhaps naively, I was never majorly concerned about my epilepsy impacting on my education or future job prospects. I didn’t see why it should and had been raised in a home where it was always conveyed to me that “difference” is not something to be viewed negatively.

I was very fortunate in that I really don’t think my epilepsy did affect either of these aspects. I missed the odd day of school or college, but it did not ultimately hinder my education or job prospects.

I don’t look at my epilepsy as a limitation; rather I acknowledge that sometimes I have to make adjustments to work around it. The only drawbacks I experience regularly relate to the photosensitive nature of my epilepsy; I consequently cannot attend concerts and have to be cautious in venues with strobe lighting. I also have to be careful to get enough sleep; sleep deprivation is one of my most significant seizure triggers.

Using it to my advantage

In many ways, my epilepsy diagnosis has given me impetus to achieve as much as I possibly can in order to prove all the naysayers wrong. I have ended up in a career where my personal experience of epilepsy is actually somewhat of an advantage. I completed a doctorate in Psychology in DCU last Summer, whereby for my thesis I explored the disclosure experiences of families living with epilepsy.

While doing so, I published a number of academic papers and got the opportunity to present my findings at conferences in New Orleans, Toronto, Innsbruck, Ljubljana and Amsterdam.

I am now working as a postdoctoral research fellow in UCD on a study that is aiming to determine the prevalence of epilepsy in a number of European countries. I believe that the personal insight I can provide in relation to my own experience with epilepsy has benefited me hugely in these positions.

Public awareness

Ultimately, I would like to play a role in making the public more informed about epilepsy. Currently public knowledge about epilepsy is very limited. Too many misconceptions about the condition prevail.

There is a long way to go in terms of ensuring that all people with epilepsy are treated with respect and afforded the same opportunities as people who do not have the condition.

I believe the more epilepsy is spoken about, the less people will unnecessarily fear the condition. People with first-hand experience of epilepsy can be instrumental in making epilepsy more visible.

Ailbhe Benson is a postdoctoral researcher at UCD. For this year’s International Epilepsy Day (February 13th), Epilepsy Ireland is focusing on awareness of the condition in the workplace. For more information log onto www.epilepsy.ie.

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Ailbhe Benson

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