August 16th 2024.
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Did you know that around 1 in every 100 people live with epilepsy? It's a condition that can affect anyone, regardless of age, gender, or background. Emma Evens, now 32 years old, was just a child when she had her first seizure. But it wasn't until she reached her 30s that she truly came to terms with having a condition that many people struggle to understand.
Dealing with epilepsy is not just about coping with the physical effects of seizures. It also means dealing with other people's fear, discrimination, and ignorance. Emma shares how difficult it was for her to accept her condition, despite having lived with it since birth. She recalls the chronic episodes she had at school, where she would lose consciousness and her body would stiffen and jerk. It was a scary experience for anyone watching, and it often left her feeling alone.
As Emma grew older, her seizures became more frequent and intense. She remembers feeling excited to make new friends when she started secondary school, but instead, she was met with fear and avoidance from her peers. She felt like she had to behave a certain way to fit in, and it was a constant struggle to feel "normal." But the discrimination didn't end there.
After college, when Emma entered the workforce, she faced even more challenges. She recalls having to resign from a job as a nursery assistant because her colleagues and manager didn't provide enough support for her condition. She often found herself alone with young children, which was dangerous for both her and the kids because she could have a seizure at any moment.
Emma has experienced discrimination from three different employers, all because of her epilepsy. She has been disciplined for taking "excessive" sick leave, and her colleagues have avoided her out of fear of witnessing a seizure. She shares the experience of being told by HR that she could only have three seizures a month, as if she had control over when they would happen. Eventually, she was let go from her apprenticeship, and it left her feeling like her employers didn't see her as a person or understand the impact her epilepsy has on her life.
Epilepsy is a widespread condition, affecting an estimated 633,000 people in the UK. It is also one of the most common long-term conditions in childhood, with five young people in every secondary school experiencing it. However, a survey by the charity Young Epilepsy found that 36% of young people and parents do not receive the necessary support for full participation in school life. And it's not just in schools where people with epilepsy face challenges.
Research by Epilepsy Action revealed that two-thirds of people with epilepsy have experienced unequal treatment or discrimination in the workplace. A survey also found that 42% of employers would not hire someone with the condition, highlighting a lack of understanding and knowledge about epilepsy and the adjustments that may be needed in the workplace. Kasam Parker, CEO of the charity Voice for Epilepsy, emphasizes the importance of employees being able to communicate their needs to their employers.
Saba Mahmood, who was diagnosed with epilepsy at 11 years old, shares her experience of downplaying her condition to prioritize caring for her brother, who has cerebral palsy. She recalls having tonic-clonic seizures only once or twice a year as a child, but as she got older, they became more severe and impacted her independence. She is unable to live alone due to the risks posed by her epilepsy, and it also forced her to give up a successful career in dentistry.
Saba's story highlights the challenges faced by people with epilepsy in their careers. Despite being qualified as a dental nurse and being promoted to a manager, her seizures made it impossible for her to continue working in the field. She now works in a hospital bereavement office, but she knows she could earn more in her field of expertise. However, she also knows that her condition makes it difficult to work in a traditional office setting. She shares an incident where she had a seizure while waiting for a bus, which made her realize the impact epilepsy has on her life.
Thankfully, Saba's current employer is accommodating of her condition. But she still feels there is a lack of understanding and awareness when it comes to her needs. She shares how she has tried to work from home, but her seizures are triggered by looking at a screen for too long. It's a constant struggle for her to balance her condition with her career aspirations. Emma and Saba's stories are just two examples of the discrimination and challenges faced by people living with epilepsy. It's time for companies and society as a whole to update their disability and inclusion policies and educate themselves on this common yet misunderstood condition.
Living with epilepsy is a reality for about one in every 100 people. Emma Evens, now 32, was diagnosed with this neurological condition when she was just a child. However, it took her a long time to come to terms with it. She had to deal with not only the unpredictable nature of her seizures, but also the lack of understanding and fear from those around her.
Emma recalls her school days, where she would often have seizures and fall unconscious in front of her classmates. As a teenager, her seizures became more frequent and she struggled to make friends as people were scared of her condition. She longed to be seen as "normal" and felt incredibly isolated.
Even after finishing college and entering the workforce, Emma's struggles continued. She resigned from her job as a nursery assistant because her employers did not put enough measures in place to support her. She was often left alone with young children, which was dangerous for both her and the kids in case she had a seizure.
Emma's seizures are of the "tonic clonic" type, which involves the stiffening and jerking of muscles followed by loss of consciousness. She believes she has faced discrimination from three different employers. She has been disciplined for taking too much sick leave and her colleagues have avoided her, fearing they would witness a seizure.
Unfortunately, Emma's experiences are not unique. Epilepsy affects an estimated 633,000 people in the UK and is one of the most common long-term conditions in childhood. However, research has shown that many young people and parents struggle to get the support they need for full participation in school life. The same can be said for the workplace, where two thirds of people with epilepsy have faced unequal treatment or discrimination.
Emma is just one of many who have experienced disability discrimination in the workplace due to their epilepsy. Now, as an experienced executive assistant, she advocates for accessibility and urges companies to update their disability and inclusion policies. It's a necessary step, as a survey found that 42% of employers would not hire someone with epilepsy due to a lack of understanding and knowledge about the condition.
Kasam Parker, CEO of the charity Voice for Epilepsy, emphasizes the importance of employees being able to explain the impact of their condition and the necessary adjustments they require to their employers. Saba Mahmood, who was diagnosed with epilepsy at 11, can attest to this. As a child, she downplayed her seizures to prioritize caring for her brother who has cerebral palsy. However, as her seizures increased in severity, they began to significantly impact her independence and career.
Saba's independence has taken a hit, as she is unable to live alone due to the risks posed by her epilepsy. She had to give up a successful career in dentistry and now works in a hospital bereavement office. Although her new employer is accommodating of her condition, Saba still faces challenges and misunderstandings in the workplace.
It's important to raise awareness about epilepsy and the impact it has on those living with it. Around the globe, 87 people are diagnosed with epilepsy every day. It's time for society to educate themselves and create a more inclusive and understanding environment for those with this condition. As Emma and Saba's stories show, epilepsy may be a part of their lives, but it doesn't define who they are.
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