For this year's #NationalEpilepsyWeek, Neil Parker tells us his epilepsy story and highlights how diversity and inclusion strategy should include supporting staff with hidden conditions.
My Story
It’s 1994 and I’ve been applying for jobs as a graphic designer, none of the application forms asks questions about health conditions (certainly none which would inform them that I’m epileptic anyway). I don’t admit that I’m epileptic on any of these applications for fear of not getting an interview.
After a few temporary roles, I start work as a corporate graphic designer, I’m introduced to a small team of designers and art workers, one of which is Jules who is partially deaf. This was my first experience of working with someone who has a visible disability in the workplace. In 1994 epilepsy wasn’t talked about let alone considered to be a disability by employers. Jules was recognised by the HR department as a person with a hearing disability which I believed could only be a good thing. However, on numerous occasions, I saw Jules treated unfairly and at times made fun of. Staff were never given advice or guidance as to how to help Jules and accommodate his condition, it was a tough experience for him, and looking back I feel I could have done more to help.
I’d had epilepsy since being diagnosed at the age of 9, and from my personal experience, I found it to be a condition others find difficult to comprehend or truly understand. It’s not often visible unless a major seizure occurs, however, what a lot of people fail to appreciate is the fact that most of the time a working person with epilepsy is trying to cope with the side effects of medication and the anxiety of a potential seizure at work. Unfortunately, major seizures can occur at any time particularly if stress levels are increased it is recognised as one of the most common triggers of seizures.
A person with epilepsy also is faced with the potential embarrassment of collapsing in the workplace, which may be a public space, seriously injuring themselves in the process, and potentially losing bladder or bowel control during the seizure. You can imagine it can be mortifying for this to happen in front of your work colleagues.
Shining a light on unseen conditions
Of course, anxiety is not limited to those with epilepsy, while epileptic workers can also suffer from depression, exhaustion, poor memory, mood swings, paranoia and many other side effects of the condition or the treatment they are taking, these can also occur with other conditions. Many other unseen conditions can cause unusual physical and behavioural problems in the workplace that may be misinterpreted or affect job performance. A bipolar person, for example, may display highs of mood and activity which swings to very low mood and depression, whilst someone suffering from significant stress and anxiety may exhibit unusual behaviours like tremors, constant visits to the bathroom, heavy smoking or drinking, they may be constantly late to the office due to feeling unable to work.
It’s important to note that unseen conditions are often treated with drugs with side effects that can impact a person in many ways including feelings of extreme tiredness, the appearance of being ‘spaced out’, and instability when walking. Worryingly, these symptoms could easily be misinterpreted and assumed to be behaviours associated with alcohol or drug misuse. As a consequence, workers living with any kind of unseen condition may be more reluctant to inform their employer, through fear of prejudice or discrimination.
Overcoming discrimination: Making unseen conditions visible
The unfortunate reality is that many people experience discrimination in the workplace as a result of their unseen condition. From my own personal experience, I know many people, who would absolutely not admit to a potential employer that they are epileptic, mainly through fear that they wouldn’t get the job, I didn’t feel comfortable informing my employer until 2005. I have even heard some people say that they have openly been discriminated against because of their condition, which isn’t just immoral, it’s illegal!
The good news is that diversity and inclusion is at the forefront of many businesses strategy in 2021. Nonetheless, I believe a truly inclusive strategy must ensure a complete acceptance and understanding of workers living with unseen conditions.
Employers and managers must actively work to identify and accommodate an employee who has an unseen condition. As mentioned previously, some workers may be reluctant to divulge the nature of their condition, and as a result, it is crucial we encourage an open and supportive culture; one which is evident from the point of recruitment and embedded in every aspect of the organisation. For example, when conducting interviews, make sure you highlight that you are an inclusive organisation and support unseen conditions. Furthermore, managers should check in with employees regularly, discuss any current challenges and work collaboratively to find solutions.
The benefits of inclusivity and knowing how to support workers with medical challenges are wide-ranging. By taking the time to make adjustments that accommodate an employee’s unseen condition, they will undoubtedly feel more productive, engaged and ultimately happier within their place of work. Moreover, the organisation will be less likely to fall foul of unknowingly discriminating against them. Finally, let’s not forget the unique cognitive talents individuals with unseen conditions have been evidenced to bring to an organisation (creativity, unique problem-solving and high levels of focus to name but a few).
How to be an inclusive business
Fortunately, in today’s working environments, inclusivity and consideration for employees with unseen conditions has improved hugely since I started work in 1994. Nonetheless, there is still more that needs to be done. Here are some of the ways in which I believe organisations in 2021 can help ensure the visibility of the unseen employee:
- Encourage inclusion from recruitment: Businesses must endeavour to have clear and detailed recruitment processes and policies in place, which will ensure equal employment opportunities for all. During the actual recruitment processes, these policies may extend to information regarding the expected behaviours associated with someone living with a specific condition such as epilepsy, arthritis, chronic anxiety, or fibromyalgia. Individuals living with these conditions should also be in no doubt when it comes to their potential employer’s commitment to inclusivity.
- Act with intention: Managers must be proactive in finding out about their employees ‘condition and the unique and complex challenges associated with it. More importantly, they must demonstrate their clear intention to support these individuals through regular check-ins, open-door policies and extend coaching opportunities. Remember that some employees may fear that disclosing an unseen condition may limit opportunities for growth within an organisation, consequently, it’s essential that these individuals feel fully supported and safe in the knowledge that they will be in no way discriminated against as a result of their condition.
- Include all staff: All members of an organisation play a pivotal role in helping to support our colleagues living with unseen conditions. As such, managers and leaders should promote a culture that seeks to train and educate members of our working teams. This education should not only relate to understanding the nuances of specific conditions, but also enhancing collective understanding of how everyone has a part to play in creating a psychologically safe environment, through the continued display of positive prosocial behaviours such as warmth, empathy, and respect.
Based on my personal experiences, I strongly believe that the primary goal for every organisation should be to ensure everyone is happy to come to work in a diverse, inclusive, and supportive environment. Through taking the time to understand the needs of those living with unique, complex, invisible, or misunderstood conditions we can ensure that no one within our working teams will ever feel unseen, unheard or unsupported again.
Thanks for reading.
Resources for employers:
Epilepsy Action Employer Toolkit - Explanations, guidance, posters and free online training
Epilepsy Society Guidance for Employers - Information, posters, risk assessments, recruitment, adjustments
Some useful reading:
Bonaccio, S., Connelly, C. E., Gellatly, I. R., Jetha, A., & Ginis, K. A. M. (2019). The participation of people with disabilities in the workplace across the employment cycle: employer concerns and research evidence. Journal of Business and Psychology, 1-24.
Norstedt, M. (2019). Work and Invisible Disabilities: Practices Experiences and Understandings of NonDisclosure. Scandinavian Journal of Disability Research, 21(1), 14-24.
Prince, M. J. (2017). Persons with invisible disabilities and workplace accommodation: Findings from a scoping literature review. Journal of Vocational Rehabilitation, 46(1), 75-86.
Santuzzi, A. M., Waltz, P. R., Finkelstein, L. M., & Rupp, D. E. (2014). Invisible disabilities: Unique challenges for employees and organizations. Industrial and Organizational Psychology, 7(2), 204-219.
Santuzzi, A. M., & Waltz, P. R. (2016). Disability in the Workplace: A unique and variable identity. Journal of Management, 42(5), 1111-1135.
Photo by Clark Van Der Beken on Unsplash