Multiple Sclerosis – or MS for short – is one of those conditions which everyone recognises but few know much about. If you were to ask me what the most frustrating thing is about having a chronic condition, it’s that most of my symptoms are invisible, which completely confuses those around me. So, unless I tell people what’s going on, no one is any the wiser.
After being diagnosed in 2008, I had the odd troubling symptom, but I managed to work throughout it all until I was slowed down by fatigue. It’s responsible for the battery-drain I face throughout the day and for the ‘cog fog’ (reduction in cognitive function), basically meaning I can go from being the expert I have worked hard to achieve, to being energy-drained and ineffectual. A few studies give a negative forecast for those with chronic conditions remaining in work post diagnosis however, in my opinion, I think the workplace is changing. Some of this is due to an evolution in employers’ attitudes toward diversity, but this is also partly due to our own self-awareness and self-advocacy.
For example, over the years, I’ve learned to listen to both my body and mental health and made the changes I share below. Whilst these are my adaptations, I hope this inspires you to find your own path.
I’m going to address this first as it’s possibly on your mind too. For many years, I couldn’t talk about my MS to family, let alone to colleagues. Diagnosis is a grieving process; there’s no time stamp on it. Talking about something so private with acquaintances can be daunting. Whilst I can’t delve too far into disclosure here, I will say that it’s a very individual decision. Disclosure relies on a number of factors: inclusivity in your organisational culture, your integration within an organisation, and the open-mindedness of your colleagues. When I found an inclusive environment, I decided to ‘come out’ with MS to colleagues, which means I don’t have to constantly explain symptoms.
A few years ago, I had a very intense period of zombie-like fatigue (slurred speech, no energy). With the help of an Occupational Health doctor, I changed my full-time work pattern to working a three-day week. Whilst working part-time is not financially viable for everyone, for me, it was life-changing. Continuing this work pattern into other roles, I work Monday, Wednesday and Friday – always having a day to recharge and to pace myself. Recently, I’ve been in relapse and fatigue has crept up, so I’ve been able to reduce my hours.
I work from home once a fortnight, on tasks that involve higher executive function. This lessens travel which, in turn, helps reduce the fatigue and pain. I had a workstation assessor look at my desk set-up, including the chair, desk, monitor and (funky) ergonomic, mouse.
I often joke that I have the world’s worst memory. The truth is that I’m just terrible at remembering certain things. I could steam-roll successfully through a quiz on the Real Housewives, but ask me the names of my son’s classmates and I’d sit here clicking my fingers as if this helped. Once swamped with post-it reminders, I now use notes and alarms in my phone, as well as in my Outlook calendar (which includes private reminders for taking my meds and even having lunch) to jog my memory. I have a notebook which is divided into areas of work, for easy reference, and I spend ten minutes at the beginning of the day looking at my to-do list, so I can organise my time strategically.
I start working slightly earlier than my colleagues so that I miss the rush hour, as it’s painful standing for long periods on public transport. Where I can, I schedule meetings and appointments in the morning, when I am at my most energetic and contributory.
Relapses can be exacerbated by stress, and I’ve realised that it’s not just about the level of stress but the kind of stress that I’m exposed to, i.e. prolonged stress of which I have no control over and doesn’t have an end. To take control, I’ve learned to challenge myself about what I become involved with (really hard for a ‘can-do’ person!).
Even after thirteen years of living with MS, I’m still learning about what adjustments and approaches work for me. I’m blessed with the opportunity to try out new things and am grateful that my employer has been led by me in adjusting to my needs. I’m considering how the government’s Access to Work scheme may help and always look out for new technologies that may enhance my work. Reflecting on the way MS has changed the way I work, I feel I’ve developed an interesting skill set that I don’t know many people have: planning strategically, awareness of when I am at my best, addressing difficult situations with diplomacy, negotiating calmly under emotive circumstances, resilience and adaptability in adversity. I’m also in a unique position to help students with health conditions as I have some valuable insight.
If you’re entering the world of work for the first time
Think about how comfortable you feel about disclosing your condition; look for signs that they are an inclusive employer, e.g. case studies, disability confident scheme, etc
If you decide to disclose, prepare for the discussion and think about specific needs
Think about how the employer can support you (reasonable adjustments) and what you might do to help yourself through your working day (approach to work)
Use your resources, from technology and HR to Access to Work and Occupational Health