An empowering employer eases the pressure of MS

Keen marathon runner Matt was diagnosed with primary progressive MS (PPMS) in 2019. In this personal account, Matt talks about his struggles with work and how his employer supported him throughout his MS journey.

In February 2019, I’d just started as a Lead Safety Manager for a railway company. Even though I was shattered, I was managing my team and rising well in my vocation.

I was awaiting a specialist appointment with the neurology department as I kept falling over when running.

Running was my stress buster, thinking time, relaxation and time to be competitive (against myself mostly). For about ten years, I had a habit of hitting the ground. This came with paying the tax of skin, blood and plenty of monkey baths (when I get in after a fall, I shout ooh aah, ooh, ooh, aah). 

In May, I had a specialist appointment and she thought I had a trapped nerve that was causing issues. After an MRI scan in June, I was called in early.

As soon as I saw the scans, I knew something was up. I thought it was the big C initially, but no, it was a diagnosis of MS and likely PPMS. This was all confirmed in the following months with blood tests and a lumber puncture procedure.

It wasn't affecting me yet, I could still run (ok, not marathons anymore, but 5 miles was doable). I went harder and deeper into my work and that was the problem.

Fatigue and brain fog started to set in. I was losing the ability to recall legislation, management systems and facts - all the things I needed for my role. My work struggles were getting noticed too.

But I was still in denial.

I was starting to check and recheck my tasks and emails, which added yet more working hours to my day.

It was obvious that I wasn’t coping, so work arranged counselling and reduced my hours, which isn’t easy in my industry. I dropped down to four working days, but I was playing catch up all the time. The working days were getting longer and longer …

Boom! Then Covid-19 hit. My work schedule went out of the window. Soon, I was dealing with 60-hour work weeks, where I was on call to anyone and everyone.

By May of 2020, the mask finally came off. A colleague asked me to do a generalized anxiety disorder questionnaire. 

There was no hiding from my mental health anymore.

The very next morning, I jumped on the phone to the doctor and that was it. I was signed off from work with a mental health crisis.

I never went back to my role as Lead Safety Manager. My vocation was slipping away.

After a few months of sick leave, my boss and I looked at my options. Neither of us knew what to do. One day I said to my boss, “I don't think I can carry on. I’ve failed.” which brought her to tears.

I was to be redeployed in the company, with just 12 weeks to find a role. You can imagine the pressure, stress and unwanted hassle that this brought with it. I was beating myself up and laying the blame at my own door. 

However, it only took 4 weeks to find a new role, which was an entry level post. I wondered, “How would this affect me, or the team I was going into?”

Thankfully, after a few meetings with HR and my boss, it all went ahead smoothly. Just 6 months after my mental health crisis, I started training for my new role … with reasonable adjustments and personal risk assessments. That was my 2020.  

Three years later, with the support of my family, church and work, I’m still employed. As of July 2022, I work part-time to battle fatigue (but that's a topic for another blog).

Time off for Ocrevus infusions, appointments and sickness due to fatigue have all been granted and supported by my employer. These appointments keep coming. I doubt they will ever stop.

There are still dark days. It’s no wonder really as I had lost my vocation, hobby and way of living. But, with an empowering and supportive company, friends and family, the pressure eases.

If you would like to know more about my journey and fighting MS, then you can do so here with my blogs: fightingms.uk

Mr Bump, aka Matt Lane