26 March 2023 is Purple Day, a day to increase awareness of epilepsy and raise vital funds to support anyone affected. I want to share my story to help shed light on this often-misunderstood condition.
I was diagnosed with a form of epilepsy called juvenile myoclonic epilepsy (JME) at 13. This is a life-long condition estimated to affect 45,000 people in the UK. In the year running up to my diagnosis, I had been struggling with the fear and embarrassment of not being able to control my body in the form of limb jerks and falls, but I did not understand why. I did everything I could to hide it, and I didn’t tell anyone. It wasn't until I had my first generalised tonic-clonic seizure (what most people recognise as an epileptic fit) on Christmas Day 1992 that my secret was out.
The seizure took place in my bedroom with the door closed. Luckily my Dad heard odd sounds and came in just in time. My tongue had slipped back and covered my airway, this is really common and normally easy to sort, but as I'd been on my own, I'd been like that for too long. I wasn't breathing, and my Mum had to resuscitate me. I was rushed to hospital.
What followed was several years of tests, scans and medication trial and error. This came with its own problems, as I often struggled to cope with the side effects of the various medications while still trying to take in and understand my diagnosis. Plus, I was fearful for my future. But most of all, my teenage self was determined to be 'normal' - I did not want to be different from my friends. This often led to me finding it difficult to cope and sometimes being my worst enemy when all I wanted was to fit in.
Epilepsy stigma and misconceptions
JME, even when well-controlled, can be physically, mentally, and emotionally challenging. People with JME often have impaired cognitive functions - for example, memory can be an issue, and it might take them a little bit longer to process information. Often people with JME find ways to adapt to these things so they don’t affect day-to-day life too much. The fear of having a seizure at work or in a social setting can also be overwhelming. As a result, epilepsy can take a toll on an individual's mental health and well-being, exacerbating feelings of isolation and depression and making it difficult to ask for help.
It's fair to say I've been on a journey. With time and acceptance, I have learned to manage my epilepsy through daily medication and avoiding triggers such as flashing lights, anxiety, stress, lack of sleep and excess alcohol (triggers are different for everyone). Plus, I've taken the time to understand the complexity and impact of JME on my brain, identify my strengths rather than focus on my weaknesses and be proud of my uniqueness. As a result, with a lot of resilience and determination, I am able to lead a fulfilling life, and I am enjoying a successful career.
I know from personal experience that employers often know very little about epilepsy. There are many misconceptions that fuel this lack of awareness. The reality is that epilepsy is an unseen condition that comes in many different forms. Every person living with epilepsy, whatever their diagnosis, will have their own triggers, story and challenges. Despite anti-discrimination laws and lots of positive developments around diversity, equity and inclusion, people with epilepsy still face stigma and discrimination in the workplace, making it difficult to find employment or be promoted.
People with epilepsy have one of the lowest rates of employment among disabled people. Just over a third of people who identified epilepsy as their “main” health condition is in employment. Research by the Institute for Employment Studies (IES) has shown that employers are "fearful" and "ultra-cautious" and might sometimes use health and safety worries as an excuse not to employ someone with epilepsy. I never felt able to disclose my condition prior to starting employment for fear of the consequences.
As someone living with epilepsy, I want to raise awareness and support for those with the condition. With 600,000 people in the UK living with epilepsy, it's time to break down the barriers and challenge the stigma that surrounds it. Communication, empathy and understanding are key to building inclusive workplaces.
The power of inclusivity
An inclusive workplace is an environment where employees feel empowered to bring their full selves to work, which can lead to improved morale, higher job satisfaction and increased productivity. But it takes time and effort to achieve. Employers have to embrace diversity and create a work environment where their employees feel valued and respected, regardless of their differences. This requires a culture of openness underpinned by respect, support and understanding. When employees feel able to share their differences and feel listened to, they feel included, and they are more likely to share their unique ideas and perspectives, leading to greater innovation and creativity.
As Head of Talent Acquisition and having spoken to many candidates over the years, it is clear that job seekers are increasingly looking for companies that prioritise diversity, equity, and inclusion and can demonstrate this in their policies, everyday activities and communications. Therefore, by creating an inclusive workplace, you can attract and retain a more diverse pool of candidates, which leads to a stronger and more talented workforce. Longer-term, you create a culture of continuous learning and growth, which can help your company stay ahead of the competition and adapt to changing market conditions.
Let's work together to remove the stigma surrounding epilepsy and support those with epilepsy in the workplace, ensuring they can live fulfilling lives and achieve their dreams and ambitions.
More information via Epilepsy Action
The Epilepsy Action Employer toolkit helps employers provide effective support to their employees with epilepsy. This online resource provides information, videos and templates to equip employers with the tools to support their employees confidently.
The Epilepsy Action Helpline offers information, advice and support on a range of issues, including employment. As well as offering advice for employees, our trained advisers can advise employers wanting to learn about epilepsy. Call the Epilepsy Action Helpline on 0808 800 5050 or email [email protected]
We have advice and information about work and epilepsy. This includes when to tell your employer and colleagues about your epilepsy, advice about care plans, risk assessments and reasonable adjustments, as well as advice on what to do if you have been treated unfairly at work.
Epilepsy Action offers epilepsy awareness training, which can help improve awareness and understanding of the condition.
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