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Understanding Epilepsy: Lucy’s Story

Category: Disability Awareness, Disability Inclusion, Epilepsy, National Epilepsy Week

Understanding Epilepsy: Lucy Wyatt

Over 500,000 people in the UK have epilepsy. That's about one in every 100 people. But how does epilepsy affect workers and what can businesses do to support epileptic employees?

 

We spoke to Lucy Wyatt about her personal experience of epilepsy, how it affects her work and the struggles she’s faced in the workplace due to her condition.

 

Lucy was diagnosed with Juvenile Myoclonic epilepsy at the age of 12 and suffers two types of seizures; absence seizures and myoclonic jerks. Now, at 33, Lucy has lived with her condition for most of her life but, like most epileptic conditions, there has never been any warning of when her seizures will occur.

 

We asked Lucy to explain what happens to her during her seizures:

 

“When I have an absence seizure I just zone out. It’s like the lights go out from behind my eyes and the slate is wiped completely clean. It could last only a few seconds and then I’ll snap back into the room but I have no memory of what’s happened for anything up to the previous five minutes.

 

“The other type of seizure is the myoclonic jerk. It’s not like a grand mal seizure but my arms will jerk or spasm and I could throw whatever I’m holding. If it’s bad enough my whole upper body will rock.”

 

Grand mal seizures are more commonly recognised as symptoms of epilepsy but what is less generally understood is the neurological effect epilepsy can have.

 

“Epilepsy can make a person feel quite isolated for many different reasons. If you have a seizure in front of someone who doesn’t know you or understand your condition it can feel very embarrassing. For me, if I have an absence seizure, I then am unable to remember what I’ve been discussing about only moments before and will have to ask the other person to tell me. Also, if I suddenly start jerking my arms around, I must come across as strange,” said Lucy.

 

Lucy is on a combination of Topiramate and Sodium Valproate, which together work to control her condition. But the side effects, combined with the condition itself, present barriers for her.

 

Common side effects of taking Topiramate are memory loss, trouble with concentration, problems with speech and feeling tired.

 

“I can talk quite slowly which I know must be frustrating for people, but it’s also really frustrating for me. My vocabulary used to be really broad and now I struggle. I feel like I’m racking my brain to find words in my mind to complete sentences. I find it difficult to express myself sometimes,” said Lucy.

 

“My neurology consultant sent me for cognitive testing recently to assess my memory. The results showed below average scores in working memory (attention) which is ‘manifested as a reduced capacity to register new information’. They also showed mild expressive language problems. The results concluded that this is reflective of my type of epilepsy and that the medication is also implicated,” Lucy continued.

 

Lucy has experienced several side effects from taking Sodium Valproate including some hair thinning, shakes (tremors), effects on the stomach and tiredness, all of which are common. Sodium Valproate also brings a high risk of birth defects to unborn children so is not usually recommended for women of child birthing age. However, having tried a number of different medications, Lucy feels she has few other options.

 

Lucy has a bachelors degree in Media and Film, a masters in European Film and Political History, a PGCE in Primary School Teaching and a masters in Building Surveying. She now works for a firm of civil & structural engineers and building surveyors, Wyatt Carruthers Jebb Limited, as Business Operations Assistant and is responsible for the management of health and safety, technical CPDs (Continuing Professional Development), technical libraries, and development of online marketing & company imaging.

 

Although Lucy didn’t struggle during her studying, she has faced major challenges in the workplace due to the lack of understanding of her condition.

 

“I have worked in places where, because epilepsy is an unseen disability, my employer hasn’t understood my condition. I made the decision early on to be open about my condition and how it manifests itself during the interview process. My [future] employers listened, but later reprimanded me for not working fast enough once I was offered the job and doing the work. They had no provisions in place,” said Lucy.

 

Although medication Lucy helps control her condition, her seizures can still be triggered by stress and tiredness.

 

“At work I would become so self-conscious that I was working slowly that I would stay after work until late because I felt like I owed it to make up the time. For me, the lack of understanding around my condition caused a lot of stress which posed a risk to my health and which could have worsened my condition.

  

“My working conditions are very different now. I’m lucky enough to now work with family who have a background knowledge of my condition and an understanding of how to support me at work,” said Lucy.

 

“The first action we take when employing a person with epilepsy is to ensure that, with the employee’s permission, the rest of the staff are aware of the disability. This is important in the case of epilepsy as the employee may have a seizure when in the office, and we would like all staff to be as comfortable with this as possible, and to be able to provide assistance,” said John Wyatt, Managing Director at WCJ.

 

Lucy works a four-day week, two days from home, to reduce tiredness. She is granted an extended application of flexi-time which allows her to start later in the morning and is given additional time to complete tasks.

 

“These are really just small matters for the company but really important to the individual. It is a serious oversight to ignore the skills that people with disabilities possess. Engineering and surveying are skills based professions and, provided that the correct inclusive working environment can be provided with good rates of pay, the employer will be rewarded with loyalty and a high level of professionalism,” said John.

 

Lack of understanding of conditions such as epilepsy leaves those that have these conditions at a disadvantage and more awareness is needed to dissipate discrimination and create equal working opportunities.

 

“I think people have a basic understand of epilepsy, and that’s that people have seizures. Most people think that if you have epilepsy you have grand mal seizures, but not all seizures are the same and not everyone’s triggers are the same. Having a seizure can affect you in so many ways. It’s also important to understand how epilepsy affects a sufferer just on a normal day,” said Lucy.

 

Cognitive testing has shown that Lucy’s retention of material over time was good and when given the opportunity to go over new information several times her subsequent recall was above average. 

 

"My message to employers would be that epilepsy is more than just seizures. In my case particularly, I need more time to process new information, but it's also been shown that 1/3 of epilepsy sufferers suffer from anxiety and depression from the challenges and feelings of isolation they deal with in their everyday life owing to their condition. I think it’s important to be aware of people's reasonable capabilities and discuss any procedures that can be put in place to help them,” said Lucy.

 

This week is National Epilepsy week, which makes it the perfect time to read up on the subject, gain a greater understanding of it and move to support workers with epilepsy.

 

Thank you Lucy for sharing your story with us.

 

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