Beneath the Tracksuit - how Robert's poetry has helped him, and others, deal with an MS diagnosis

After being diagnosed with MS in 2015, Robert turned to poetry to help cope with some of the emotions of living with an invisible illness. Here, Robert, also know as Beneath the Tracksuit, talks about how poetry has helped him express himself and turn his pain into something meaningful.

My name is Robert Gillett and I was diagnosed with relapsing remitting multiple sclerosis in 2015. It took a little longer than a year to finally get a diagnosis. There were so many tests, with a few different conclusions at first. It could have been a stroke, it could have been clinically isolated syndrome. My MS was atypical so it was hard for the doctors to diagnose.

My first symptom was that I froze. I was literally stuck, fixed in a position building a kitchen cupboard (I used to be a kitchen fitter). For around 20 minutes I couldn't move. It was horrible, I couldn't shout, I was just stuck. Slowly the feeling started to come back and as soon as I was able, I left work, drove home and the tests began - blood tests, ultrasound scans, eye tests, balance tests, MRI scans and a lumbar puncture.

It's been seven years since I got my diagnosis and my MS has settled although in 2019, I had my last relapse which left me with foot drop, significant balance issues, dreadful fatigue and weakness. If I go out anywhere now, I have to use a stick, scooter, wheelchair or mart cart. 

It's been a long road to where I am now. It's strange that the more disabled I've become, the stronger I feel. The more MS throws at me, the better I become at dealing with it. I've gone through some serious bouts of depression and I've felt like giving up more times than I can imagine but I think that would be normal for anyone in a similar position. We must remain strong, find an outlet, somewhere to help release the pain. 

I started writing poetry as a form of thought diary. The more I wrote, the more I found it was helping. I was able to tell stories with my pain, to turn it into something meaningful. It was helping me explain my struggle, explain what MS means to me. I put my fight into words that I'd struggle to say out loud. Every poem comes out of what I’m feeling at the time of writing.

After I started writing, my partner Donna suggested I could share it with others. I named my page Beneath the Tracksuit after one of the first poems I wrote. Most people only see a young man in a tracksuit and not the struggle beneath it. Multiple sclerosis is an invisible illness so the problems I live with are not easy to see. I've had numerous people question it including friends, family members and the general public. 

I've been posting poems on my Facebook page for more than six months and have reached over 300,000 people, with over 6,000 followers. I have people thanking me daily, telling me how much I've helped them, how nice it is for them to read something that reflects exactly how they are feeling. I've had people’s friends, partners and carers thank me for helping them understand what others are going through. I find it amazing how much of an impact it's having and how much I'm helping others. Sometimes I can’t comprehend it. 

I'm grateful for every message or comment that people leave. What I write from my pain and my struggles has become something I could never have dreamed of. 

One day at a time, 
I find myself living one day at a time.
I live such an unpredictable life.
With unpredictable symptoms,
Unpredictable emotions, 
I never feel stable, 
I do whatever I can,
Whenever I'm able.
I never plan to far ahead,
It doesn't sit right in my mind,
I live my life by only taking one day at a time. 

Everyday,
Different struggle,
Different daily pain,
Its hard with this illness,
There are no two days that are the same.
I begin my day with apprehension,
Still I start each one as a fresh, 
I prepare for the worst, 
Can only hope for the best.
What else can you do? 
Living with an illness like mine,
Everyday is unpredictable,
So I take it one day at a time.

One day at a time ©️
Beneath the Tracksuit 
Robert Gillett

• Beneath the Tracksuit - Read more poetry from Robert on Facebook