I’m Carys Bello, a Head of Social Media who faces the daily challenge of managing my life alongside a chronic illness called M.E. (Myalgic Encephalomyelitis). M.E. is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK and around 17 million worldwide.
People with M.E. experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and the brain’s inability to recover after expending even small amounts of energy.
Many M.E. patients, due to the condition’s unpredictable nature, cannot work. While M.E. severity varies, I fall into the mild category, though I still experience intermittent severe days. Being mild means that I am fortunate enough to be within the small bracket of people who suffer from M.E. who can still work, however, this hasn’t always been easy.
My formative years in the workforce were marked by a lack of understanding about my health and a diagnosis that eluded me. In an early job, I often missed shifts because I couldn’t stand for extended periods and didn’t understand my right to request accommodations, such as a chair since sitting was deemed as unprofessional. It becomes easy to tell yourself it is your own fault for not speaking up but I now believe we’re not taught to assert our needs in the workplace from a young age. Encouraging and normalising this behaviour can help individuals avoid suffering in silence. The lack of a diagnosis made my journey particularly challenging. Many individuals with chronic illnesses grapple with debilitating symptoms without the validation of a medical diagnosis, making it difficult to seek support in the workplace. Without a formal diagnosis, I convinced myself that I was exaggerating my pain and exhaustion and shouldn’t seek help. Obtaining a diagnosis, while bittersweet, validated the physical challenges I had been facing, ultimately bolstering my confidence to advocate for my needs in future roles.
As my health worsened, I was extremely anxious about my ability to work and make an income to support myself. I feared that there was only one way to work and that I could never have something that could work for me. In various following jobs, it was apparent that companies did not have the resources to understand and accommodate additional needs. The lack of education and awareness within workplaces meant having to repeat and explain myself over and over again which was mentally draining. I believe that it is important for employers to educate themselves and become aware of the conditions of their employees to avoid this. If an employer understands what may be useful to an individual and can offer accommodations this takes the weight off the employee. Not only this, it makes the individual feel less of a burden when employers already have an understanding of what they need because they don’t have to keep fighting for support. With the right accommodations, we are just as capable as any other employee. Whilst working various in-person jobs it was clear that even with adjustments I needed a remote job which wasn’t feasible with many of the roles I had. I struggled for a while to get the right job for me as the fear of not receiving adequate support held me back and we shouldn’t be afraid to seek the support we have every right to. Advocacy for these issues can help reinforce this fundamental right.
Through speaking to family and friends about other workplaces and fair treatment, I eventually realised that I could find a suitable role that would give me support. I realised that this was within my rights to do so and I gained the courage to move jobs. Fortunately, I found a fully remote job that offered me support with no questions asked. When employees feel understood and cared this takes half the battle away enabling employees to work more efficiently with the adaptations that suit them. Having the right adjustments at work not only helped my physical needs but also my mental health. Feeling like I can complete the work in a way that suits me rather than exhausting myself to work the way everyone else does helps me feel more accomplished and not a burden.
I share my story to emphasise that employees have the right to voice their needs at work. This not only liberates them from feeling like a burden but also enhances their job performance. Companies could do more by educating themselves about various health conditions to create a more understanding and harmonious work environment. By fostering an atmosphere of support and accommodation, organisations can help individuals like me thrive despite the challenges of chronic illnesses. Though it comes with challenges, through support and the right adjustments I am lucky enough to be able to continue working despite my chronic illness.
