In this piece, originally published at the beginning of 2020, Lucy Dawson discusses her experiences of encephalitis and employment.
Lucy was 20 years old when she suddenly became severely unwell with an unexplainable illness. After being incorrectly sectioned under the Mental Health Act, and placed in a psychiatric ward for three months, Lucy’s condition worsened almost to the point of fatality. Although it was eventually uncovered that she had fallen victim to anti-NDMA receptor autoimmune encephalitis, doctors failed to recognise this and so it led to further complications, which have now left her permanently paralysed.
The years following Lucy’s diagnosis of encephalitis required much adjustment, including learning how to live with a physical disability and also an acquired brain injury. Through starting her blog and also taking to Instagram, Lucy managed to improve her writing skills to the point that she was able to finish her degree. Today, she shares with us some of her experiences in entering the world of employment…
Being disabled at a young age brings about a lot of difficult conversations, not least when it comes to employment. There are important conversations that must be had with potential employers, regarding encephalitis, your wellbeing, and your capabilities in the workplace. It can feel like a challenge even to convince employers to take account of your strengths and consider you for a role, despite other candidates not posing the health challenges you face.
Of course, employers are not allowed to discriminate based on a person’s disability; this is against the law. Employers must make reasonable adjustments to support those with disabilities in the workplace. However, there have been times where employers will disregard these rules. In the past, I have been outright told that I can’t do a job because of my disability. Other times, they have dressed up a different reason to disguise the real issue – that is, I’m physically disabled.
I understand that there are certain jobs that I will never be able to do now, regardless of the adjustments made – but I thought I would share an incident where I was working in a well-known department store, as a customer assistant. I had fully disclosed my disability when applying, attended the interview with my walking aids, and been totally upfront about my condition, so I was delighted when I was hired.
The work was painful on my leg as I had to stand for long periods of time, so when I was behind the till I requested a chair to sit on whilst serving customers. I was immediately made to feel as though this was a huge nuisance, and found myself backing down and saying, “oh don’t worry about it, I guess”.
After a couple of weeks, however, the boss asked me to go for a chat in her office at the end of my shift. There, she basically asked me, in a round-about way, if I could ditch the crutches because they were making the shop floor look untidy. You know – the crutches which I use to aid my mobility … the crutches which allow me to stand up and walk around. I could tell she was having a bad day and was looking for someone to take it out on, but this was the first time that I had experienced outright discrimination due to my disability, and the worst part was that I just sat there and took it.
As I went to collect my things after leaving her office, I could feel myself shaking with anger… how on earth had I just sat and let myself be spoken to like that? After everything I had been through and knowing everything I know about equality, why had I allowed that to happen? I was so frustrated that I began to cry and that night I couldn’t sleep at all. I was so upset that at 4 am, I emailed HR and resigned. This experience has definitely made me extremely nervous about future employment. I don’t think I would feel comfortable working in retail again, knowing that similar situations could happen.
More than this, it is impossible for anyone who hasn’t had encephalitis to understand the debilitating extent of pressure and exhaustion that comes from having a brain injury. From the cognitive dilemmas of slower reaction times and memory loss to the constant fatigue and sudden irritability, being around people can sometimes be unbearable. But still, we must make a living. There is no free pass just because we have suffered such tragedy.
Beyond the brain disease itself, the trauma of such an event can have a long-lasting psychological impact on those who have experienced it. It is so difficult to expect employers and colleagues to imagine what it’s like inside our heads – and so we continue to try our best to be the person, or the employee, that they expect us to be. One of the drawbacks of being so brave is that it can lead people to forget how much you are actually suffering.
In terms of what could be done to help those who have had encephalitis in the workplace, I think the most important thing is to be understanding; facilitate conversations with no judgement or lack of empathy. More than that, a higher awareness of the disease is essential so that it does not become our job to educate everyone that we come into contact with. We shouldn’t have to justify and prove the ways that our condition affects us, to have the same opportunities as everybody else.
Overall, I believe individuals who have suffered from encephalitis desperately want a ‘normal’ life, and to remain the person they were before they were ill. It’s not always possible for those who’ve experienced the disease to work, but for those who can work, I’m sure they would love to find suitable opportunities and get on with their lives.
Thank you so much for sharing your experiences with us, Lucy!
Astriid’s mission is to help people with chronic illnesses and long-term conditions find meaningful work, and bridge the gap between the Invisible Talent Pool (people who have long-term conditions but who still wish to use their skills and experience in work), and the UK skills crisis. You can find out more about us, register your skills as a candidate, and sign up as an employer, by visiting this page.