“All rest and no work” made me a bored girl.
At the time of my diagnosis, I had been forced to give up work entirely and was advised to apply for disability allowance. My body and brain were unreliable and couldn’t be trusted to stand, hold, remember, or process information. A self-confessed workaholic, I was used to working weeks in a row without rest, and my extreme work ethic probably contributed to my symptoms. I had been ill at home for a year, which whilst needed, left my pockets empty, and my mind yearned for human interaction.
I missed listening to people chat, and moan. I missed being able to people watch, being prompted to look out of the window by a flash of a flowery dress outside and checking out a colleague’s new hairstyle inside. My friends and family knew I was going stir crazy and would try to visit as much as they could, my colouring books and word search collection multiplied. I binge-watched TV, pottered around, finding minor DIY projects to occupy my time. The fact that I am photosensitive meant that despite lots of beautiful weather, the only picnics I had were beds ones.
I spoke to my friend (a fellow warrior) who encouraged me to go back to work, saying that working had made such a difference to her moods and cognitive function. I spoke with my rheumatologist and informed him of my intention. The fact that the Lupus was still active meant that I was at greater risk of catching infections from work. He reminded me that there may be days when I wouldn’t be able to get out of bed or when the brain fog would affect my focus. In return explained all the reasons that going back to work would benefit my positivity and therefore my healing, and he agreed that I should give it a go.
I considered the type of work that I could comfortably do. I wasn’t going to be able to work in a shop, as I would potentially have to be on my feet all day, and I wouldn’t trust myself to hold items without dropping them. The best thing was for me to look for reception or administrative work.
I applied for an administrator role with the charity Off The Record Youth Counselling Service. I was nervous about my application, the fact that there had been a year gap in my work history, and having brain fog, I wasn’t even sure that my answers made sense. I didn’t have time for anyone to look over it, so I prayed and sent it in. On the application, I was as honest as I could be. I declared the lupus, citing it as the reason for the gaps in employment. I was extremely surprised when I was called in for an interview.
At the interview, I spoke about having lupus, the difficulties of the previous year and how it had changed me. I spoke about how I planned to manage working in an office environment, how there may be days when I would be slow, but I was dedicated to getting all tasks done. I was honest about still having regular hospital appointments and explained why I needed to work part-time and assured them that to the best of my ability I would try to arrange appointments around my work hours. I was even more surprised when they offered me a job.
Before I accepted the role and signed my contract, I made sure they were clear about my condition and the needs that I would have if I took the role on. Needs such as a ten-minute break every two hours. I would also need to be seated, require a footrest at my desk, wrist rests and an ergonomic mouse. I made sure that I was clear on the sickness and leave policies and had a family member read my contract and job description to make sure they worked for me, and I hadn’t missed anything.
Almost 3 years on, I believe that going back to work was the best thing for me. The conversations that I have had, the people I have met, have brought me back to life. Being able to raise awareness at work gave me the confidence to try to raise awareness on a wider scale through my social media posts. Seeing people on my route and exchanging a smile, laughing at the toddlers misbehaving on the bus, has meant that every day I travel to work is a new experience. It gives me something to talk about when people ask, “how was your day?”. I understand that for a lot of us warriors working is not an option at all, so I know I have been extremely blessed and will not take that for granted.