Five years on from my MS diagnosis

In 2020, my husband Neil and I walked out of an appointment that would change everything. We’d gone into the neurologist’s office, and I left with a label I never expected: disabled.

The neurologist showed me an MRI scan and asked, “You know what that means?” I didn’t. I just shook my head. “You have MS.” I wish I’d said, “But you told me that was extremely unlikely!” Instead, I sat there stunned. It’s hard to believe it’s been five years since then.

MS wasn’t in the plan. Not that I ever had a plan, but if I had, this certainly wouldn’t have been part of it.

Life before the diagnosis

Before MS, my life was a whirlwind of running marathons and a high-stress career in the PR world. My days were packed, and I thrived on being constantly busy, always running at full throttle. Fitness was a huge part of my identity - I’d even go for lunchtime runs with colleagues.

The first time I had ‘jelly legs’ was after the London marathon, three years before my diagnosis. It was horrible, but it was over in minutes, so I didn’t think much of it. It then started happening after half marathons, 10ks, and even 5ks when I’d pushed myself hard. I remember saying to someone after a Park Run that my legs felt like they were collapsing. I thought it was just age.

When people told me in those early days that I could still lead a “fulfilling life,” I hated it. What the f*ck is that supposed to mean?

The weight of acceptance

Five years ago feels like yesterday. Shortly after my diagnosis, I asked someone how long it took him to accept having MS. “Never”, he said – that was his experience, and, at the time, I was flabbergasted. Surely not! Surely, one day I’d come to terms with it, right?

But today, I still push too hard, still get wiped out, and still can’t wrap my head around having an illness with no cure. MS is something I think about every single day. Five years on, my life is different, but it hasn’t ended. I’m learning to adapt, to fight back, and to focus on the things that matter most.

A yoga teacher told me, “You’ll become grateful for it. It will become part of you and who you are.” I’m not there yet, and honestly, it’s not who I am. But MS has opened my eyes to resilience and the incredible ways the body can adapt. I’ve gained an appreciation for the small things: walking, sleeping, even going to the loo. For most people, those are automatic. For me, it’s an effort. The signals from my brain, particularly my right side, are messed up. I hobble, fall, and exhaust myself, overthinking every step. And then, on the floor, I go again.

MS can affect everything - body, brain, bladder, you name it. Most of my symptoms are invisible: fatigue that flattens me, numbness that makes the world feel far away, and a bladder with a mind of its own. The one you can see? My walk. It falters when I’m tired, overheated, or just on uneven ground. And then there are the bruises - always new ones. A mix of dog lead chaos, surprise floor meetings, and that special MS talent for finding the sharp corner of a table, every single time.

A life reimagined

When I look back at marathon photos, I look at myself and think, “If only you knew”.

I miss people: my colleagues and the camaraderie of work trips and discovery. There’s no way I could do things as I used to, but I’ll always be grateful for the opportunities I had. Day trips to multiple places in Europe are a thing of the past, unfortunately – it needs to be two days at least! Fatigue always wins.

My stressful PR career in tech was brought to a halt, and I still battle with that. But I still try to stay connected to that world because I love it. 

I volunteer when I can, using skills I built over 20 years, and channel my energy into managing our holiday let. Having a purpose is essential for me, even if it’s a slow burn. I’m now pursuing my own writing, including poetry, and a master’s in creative writing. I’ll also launch a podcast later this year- meaningful conversations with people who’ve adapted to challenges. I’m redefining ‘fulfilment’.

Spreading awareness

I always remember this quote from the first Amy Winehouse documentary: “Life teaches you how to live it if you live long enough to learn it.” It struck a chord with me. I’m hoping to publish my story next year; it’s been a kind of therapy for me. Between MS and menopause, I’m often confused and now forgetful, which I never was before. Still, I’m undoubtedly happier than I was in my 20s, so that’s something.

Over the past year, I’ve been posting less on my social media. Taking a break was good for me, but now I feel ready to return to spreading awareness. I’m back sharing my journey over on Instagram at @hannahjweb. And I’m praying we can find a cure in my lifetime.