Telling colleagues was hard as I didn’t want to be treated differently. But it was the right decision, people were understanding and I was able to keep working.
I had just returned from maternity leave, after having my first child. It hadn't been the easiest of times as I was looking after a baby on my own and going through an acrimonious divorce. My role at work had changed since I had been off and so I had even more to prove. Add in a house move the previous year, I suppose life was pretty stressful!
One day, I remember walking down the corridor to my office feeling as though my leg wasn't my own. I had strange sensations down the side of my face and my head was sensitive, feeling like I’d been burned. I couldn't wash my hair due to the pain.
I was scared, yet carried on with work, hiding it all. It was only when the symptoms had gone, that I thought I should get myself checked. I assumed it was stress. But my GP quickly concluded it could be MS.
I had various tests over the next few years but remained fine so carried on progressing my career. Fast forward nine years, I was happy with my new partner, and we welcomed our son. Just after returning to work, I started to feel disorientated.
My colleague gave me an odd look and asked what was wrong with my eyes. I was diagnosed with nystagmus and diplopia and given intravenous steroids. An MS diagnosis was given too but I still didn't tell work as I didn't want to be viewed differently.
When I finally told colleagues, I was able to reduce my working hours and received support with medical appointments and priority parking. Still trying to prove myself, my career reached its pinnacle when I took on a new full-time role which came with long hours and high levels of stress.
Looking after my health, wellbeing and work-life balance took a back seat. The result was a relapse which I was never going to fully recover from. I took a step back to a lower-level job I'd done before and reduced my hours.
It's been difficult to accept the premature end to my career climb, although I know it was the right decision. It means that I can stay working and I’m able to spend time outside work doing things that I enjoy. It's good to keep my brain active, which I do both inside and outside work and have time to rest and recuperate.
My symptoms have changed over the years and there have been several conversations about reasonable adjustments. Many people don't understand about MS and how it affects each individual so it must be hard to manage as an employer. The dialogue needs to be ongoing, open and honest.
There may be simple adjustments that can be made where a manager an help, such as starting meetings a little later, or working from home more often.
I need more adjustments now and, as structural changes have occurred at work, I have had to start the conversations again. I've found that reports from Occupational Health have been a good starting point to help managers understand my needs and their legal obligations under the Equality Act 2010.
Occupational Health have also suggested things I may not have thought of, such as MS sickness being recorded separately to avoid sickness levels being triggered, having my workstation near welfare facilities and a personal emergency evacuation plan.
My MS Nurse has been brilliant in preparing letters for work to explain the challenges I have. Sometimes, adjustments have been arranged informally, which hasn't helped when there has been a change of management.
It's worth having a record of what has been agreed and revisiting it regularly to ensure it's all still appropriate. I keep an ‘I have MS’ card on my lanyard to raise awareness in the workplace.
Disclosure is the first step, after that you need to be proactive to manage your MS in the workplace to ensure your needs continue to be met.
