Writer and fitness fanatic Hannah Webster marks five years since her multiple sclerosis (MS) diagnosis – a moment that changed everything. On January 27, 2020, she left a neurologist’s office with a label she never expected: disabled. Since then, she has navigated the highs and lows of living with multiple sclerosis, adapting to its challenges while refusing to let it define her.
In this reflective personal story, Hannah shares her journey of resilience, the impact of MS on her life, and her hopes for the future.
I can’t believe it’s been five years. On 27th January 2020, Neil and I walked out of an appointment that would change everything. We had gone into Dr. Julien Furby’s office at The Hampshire Clinic in Basingstoke, and I came out with a label I never expected – disabled.
The neurologist showed me an MRI scan and said, “You know what that means?” I didn’t. I shook my head. “You have Primary Progressive MS.”
I should have responded, “But you said that was extremely unlikely!” Instead, I sat there stunned, trying to make sense of his words.
Before that appointment, I wasn’t overly worried. Dr. Furby himself had told us MS was improbable. Still, at the back of my mind, I had wondered if the worst could happen. Neil later admitted he had suspected it but chose to keep those fears to himself.
Thankfully, as more tests were done, it turned out I had Relapsing-Remitting MS (RRMS) instead of Primary Progressive. If one must live with MS, RRMS is the “better” option, though it doesn’t make the journey any easier.
MS is progressive, and RRMS can lead to Secondary Progressive MS (SPMS) over time. I hope to push that possibility as far away as I can – 20 years, 30, or hopefully never.
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. I’m not facing this journey alone, and for that, I’m endlessly grateful.
Trying to come to terms with my MS diagnosis
Five years ago feels like yesterday. I’ve been revisiting my first blogs and diary entries from those early days, and every feeling I had back then is still so vivid—because I still feel it now.
I remember asking someone shortly after my diagnosis how long it takes to truly accept having MS, to make peace with the fact that it’s part of your life forever. He said, “Never.”
At the time, I was flabbergasted. I thought, surely not! Surely, one day I’ll come to terms with it, right? Everyone told me to take it one day at a time, but all I could see was a life I didn’t belong in, a life where running miles every week, juggling a high-stress career, and living at full throttle would no longer be possible.
That 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.
Now, five years later, I see he was right. I haven’t accepted it. I still push myself too hard. I still get wiped out almost every day. And I still can’t fully wrap my head around the fact that I have a chronic illness that, to this day, has no cure.
Here’s something I wrote six days after my diagnosis. It’s from my blog Fitness and MS, where I opened up and shared the news with everyone for the first time.
“I was going in to speak to the neurologist at the Hampshire Clinic in Basingstoke, after having a two-part spine and brain MRI a couple of weeks previously. On the initial appointment, he seemed pretty confident that it was NOT going to be MS, so I went in last Monday thinking a few pills, injection at worst, and all would be right.
I’ve got to be honest, the moment, he said those letters – M.S. – I don’t really remember much else of it but luckily my husband, Neil was there to ask the sensible things one should ask.
Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel.
Now I’ve had a few days to try to process it, it all seems kind of obvious really. I think I can remember the first time I had ‘jelly legs’ it was probably after the London marathon around 3 years ago, it was horrible, but gone within a few minutes, so didn’t think much more of it, after all, I had just done a marathon! It then started happening after half marathons, 10ks and even 5ks when I had pushed myself quite hard. I remember saying to someone after a Park Run in Basingstoke, that my legs felt like they were collapsing, really thinking, it was age, and surely it happened to everyone!”
Sharing my MS diagnosis
I’ve never been embarrassed about sharing my MS diagnosis – it never even occurred to me that I should be. I know some people prefer not to, but for me, talking about it helped me process it. Saying it out loud made it real.
All the awkward, embarrassing symptoms? They’re just everyday chat for me now, much to Neil’s exasperation. I remember telling my boss the very first day, along with a few others. Needless to say, we broke Dry January that evening in the White Hart in Hook – Hi to the Hampshire lot!
The next day, I went straight to the office, still in an out-of-body daze. A few days later, I did the worst presentation of my life for the Head of Marketing. I can’t even remember what I said—it was just a blur. People were kind, but what do you say to someone who’s just been diagnosed with MS? All I could think about were the worst-case scenarios I’d read about. How was I supposed to live with this?
Even now, five years later, it’s still something I think about every single day. I wish I didn’t have to, but MS is always there, reminding me.
Over time, I’ve connected with many people around my age who also have MS. I’ve followed their stories and seen how they manage to live healthy, fulfilling lives despite their diagnosis. And while I’m grateful for their examples, I’ll never quite get over what MS has taken from me. Even writing that makes me cringe.
When people told me in those early days that I could still lead a “fulfilling life,” I hated it. What the fuck is that supposed to mean? Was I leading a fulfilling life before? I didn’t even know what that phrase meant, and I still don’t like it.
Another thing I was told at the beginning was that you would find out who your friends were. I thought that was odd/scary as well, are there people who would decide they didn’t want to be your friend because you had an illness? To be fair, if there are, they probably wouldn’t have been a friend to start with, and they can fuck off anyway!
So, thank you to all of my friends who I know wouldn’t do that, for the moaning, the lack of meetups over the last few years and for just being there, over the internet or phone. I wouldn’t have been able to handle this on my own. Friends I see most days at the gym – and those further afield – thank you for being the support, it means the world.
Gratitude in the struggle with MS
Having said MS has taken things from me. It’s also given me reasons to be thankful. This might sound ironic, given my fitness obsession, but it’s true. Being a runner probably sped up my diagnosis by a couple of years, as I noticed subtle changes that others might have ignored. And, as I’ve said many times, we wouldn’t be living in Pembrokeshire if not for MS. Living on the coast, surrounded by nature, makes me smile every day.
I remember a yoga instructor telling me during those first few weeks, “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 given me perspective—it’s opened my eyes to disability, resilience, and the incredible ways the human body can adapt and how it works. 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 to particularly my right side are messed up. I hobble, fall, and exhaust myself, overthinking every step. And then, on the floor, I go again.
I deeply admire adaptive athletes and anyone facing challenges that make life that little bit harder. They inspire me to keep going, even on the toughest days.
I remind myself: It could be worse. I’m not in a wheelchair, though I often need walking aids. I can still see, even with short-sightedness catching up with me. One of my first symptoms was optic neuritis, which caused me to go blind in one eye. Thankfully, my vision recovered, and I’m still driving. That independence means everything to me, and I hope it continues for a long time.
MS can affect everything—no part of your body or mind is safe. That’s why every person’s experience is unique. Common symptoms like fatigue, bladder issues, and numbness affect me too. The most visible for me is walking—or my inability to. It gets worse when I’m tired, overheated, or, sometimes, for no reason at all. The rest of my symptoms are hopefully invisible (aside from the bruises), and I’m so thankful for that.
A life reimagined
When I look back at photos of myself running marathons, I think, If only you knew what the future held. I wouldn’t have believed it. So, here I am. Grateful in ways I never expected, but still hoping – please don’t get worse.
I miss people – my teammates and the camaraderie of work trips and discovery. Sure, I don’t miss tradeshows or boring PowerPoints as much, but work itself has changed. There’s no way I could do things as I used to, but I’ll always be grateful for the opportunities I had. Work took me to places I never dreamed of visiting, like India, and introduced me to incredible people from all over the world.
Day trips to multiple places in Europe are a thing of the past, unfortunately – It needs to be two days at least! I’m terrible at giving myself that time to recover. Fatigue always wins and day trips to Europe are out of the question. It needs to be two at least!
I still try to stay connected to the PR world because I love it. It moves so fast, especially in tech. I volunteer for non-profits when I can, using skills I built over 20 years. I’ve also tried to channel that energy into managing our holiday let and, of course, my writing.
Having a purpose is essential for me, even if it’s a slow burn. I admit I struggle with guilt when I’m not busy. I’ve always thrived on stress and deadlines, and re-focusing that energy is a constant challenge.
As well as getting some writing published, I would love to start a podcast. I’m not too much of a talker in front of lots of people, which could be problematic, but I love the idea of diving into meaningful conversations with adaptive people, making them funny and relatable to everyone. One-on-ones are much more my thing, so I can use my interviewing skills to strike up conversations, not lectures.
Right now, I’m in the second year of an MA in Creative Writing. Being a student in your 40s is funny – I mean, I was a terrible one at 18, but everything feels so different now. Over the past couple of years, I’ve realised just how much I’ve changed—not just since my diagnosis, but from the person I was 25 years ago.
In my 20s, I was a mental mess, lost if I’m honest. Looking back now, I’m quite shocked I made it past 30. Somehow, without any guidance, I stumbled into corporate life at 25 and bought my first flat at 27. Before that, I’d spent a few years travelling the world and working in Spain, but I reached a point where I craved support and stability. I felt lonely.
The newfound routine and structure saved me in ways I didn’t fully appreciate at the time – I’d never had that kind of grounding before. I’ve been incredibly fortunate to build a career filled with unforgettable experiences and friendships that still mean the world to me. I was always destined to work in a sociable role, and events and travel gave me so much joy. And, of course, having colleagues to go for a lunchtime run with was the icing on the cake!
But we move on, I will be forever grateful for life before despite being cut short, but now is the time for new and exciting ventures that I do look forward to, I must cut the cord, so to speak and look forward!
Life now looks nothing like I expected (what did I expect?), but I’m finding ways to adapt. Whether it’s through writing, podcasting dreams, or simply appreciating the little things, I’m learning to reimagine what fulfilment looks like. It’s not always easy, but it’s a journey worth taking.
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. Perhaps I’m going too deep here, but for a couple of university assignments, I’ve been writing autobiographical pieces. It’s been an emotional process, making me reflect on my younger self with a sense of sorrow and compassion.
I’m hoping to publish my story next year, even if no one reads it. It’s been a kind of therapy for me. My last module starts next month, and I want to finally finish some of my fiction work as well. I’m hoping that once I dive in, I’ll improve with each attempt.
Facing additional challenges: ADHD, menopause and mental health
I will stop procrastinating and learn to work with my neurodivergence (ADHD, as my tutor recognised). Neil is bemused by this but thinking that perhaps I’m not completely mad, just a little quirky, has been a relief. Between that, MS, and menopause, I’m often confused and now forgetful which I never was before, but I’m undoubtedly happier than I was in my 20s, so that’s something.
I know I’m not alone in this. The recent media focus on mental health and ADHD has been both a blessing and a curse. Back in the day (bloody hell that’s an ‘old’ person thing to say!), everyone just got on with it—diagnoses were rare and left for the most disruptive, and support even rarer. I’m far from an expert, but it’s clear there’s still much work to be done to help those who truly need it.
It’s also impossible to ignore the broader context. According to data from the Office for National Statistics (ONS), the suicide rate in England and Wales has fluctuated over the years. In 2000, it was 11.1 deaths per 100,000 people. By 2022, this had decreased slightly to 10.7, but in 2023, the rate rose to 11.2—the highest level since 1999. This increase highlights the ongoing importance of mental health awareness and the need for effective suicide prevention strategies.
If you or someone you know is struggling, please remember that help is available. I’m adding this as you never know who may be struggling; life is tough, and it can be the people you least expect. Organisations like Samaritans provide confidential support at 116 123 or online at samaritans.org. Please reach out – it can make all the difference.
I’ve developed a newfound interest in politics, some of it Trump’s fault! Funny how life works – I think I’d be much better equipped now for the journalistic career I craved in my younger years (though PR was a close second!). Podcasts have become my go-to, and they’ve sparked an awakening in my inner feminist. With some extra time on my hands these days, I’ve found myself reflecting – probably overthinking – about certain moments from my 20s that truly shocked me. Looking back, it’s disturbing what we (or I) accepted or did.
Honestly, it’s probably a blessing I never had kids, especially a daughter – she’d likely hate me! Motherhood is a topic I might explore further in my book. It wasn’t something I consciously chose against, but one day I was 40, then diagnosed, and it was too late.
That said, I’m incredibly grateful for the family I have. Between three amazing stepkids, a cat, and now two utterly bonkers dogs, there’s barely a shred of energy left to spare. To be clear, it’s the dogs, not the now-adult kids, draining me dry!
Reflecting on my MS diagnosis and continuous treatment
Having re-read several of my previous blog posts, the emotions still feel so raw. So much has happened since then – I’ve done so much – but it also feels as though time has stood still. I do feel much older, though, and as I said, I’ve changed as a person – a little more patient with things and people. You kind of must be in Pembrokeshire! As much as I still want to go a million miles an hour, I’m learning to accept that I can’t, no matter how hard I try.
The lead-up to the brutal stem cell treatment (HSCT), which will be three years ago this April, kept me focused and fighting. That’s a story for another time, but I’ll say this – I know now that things aren’t going to get any better than they are. I haven’t given up hope, but I understand now that this is never going away, and it wasn’t the cure I perhaps subconsciously thought it might be. I told myself a million times it wouldn’t be. The best we could hope for was to stop the progression.
And yet, you always cling to that glimmer of hope. Whether it worked or not is hard to say. Some days, I believe it has. Others, I convince myself it hasn’t. My yearly MRI scans are promising, so far, no new lesions—but the battle with the NHS continues.
I’ve had to go private to get my spine scanned in addition to my brain. I had this year’s brain MRI last week, and now I’m in that excruciating waiting period for the results. I’ll need to arrange the spine scan soon. Having the MRI is easier than waiting for the results, although to be fair, three hours in the machine isn’t exactly my idea of a good time.
Raising awareness of multiple sclerosis
Over the last year, I’ve been posting less on my socials, it’s true. To be honest, I was tired of it consuming my life. It’s in my head constantly, and sometimes I just want to feel “normal.” I’ve tried – and failed – to forget I have it. I mean, it’s not like MS is ever going to let me forget. I’ve gone from a life where it didn’t occupy any space in my mind to it taking up all of it, and it was driving me mad.
Taking a break was good for me, but now I feel ready to return to spreading awareness. I’m praying we can find a cure in my lifetime.
What does the next 5 years hold? Honestly, I’m not sure. Hopefully, more walks, more gym sessions, finally achieving that elusive muscle-up (though I’ve been saying that for the last 10 years!), more writing (a published book or two!), more learning, more meaningful work, more time with friends and family, more visits to new places.
Thank you for reading and for being part of my story. Sharing this helps me feel connected and reminds me that none of us are truly alone in whatever we’re going through. If there’s one thing I’ve learned, it’s that resilience isn’t about being invincible; it’s about showing up for yourself, day after day, no matter how hard it gets.
Here’s to finding joy in the small things, progressing over perfection, and spreading awareness in the hope that one day, MS will just be a memory we’ve all left behind. Take care of yourselves and each other.
I can only hope and dream – because, at the end of the day, that’s all we can do. If you’d asked me five years ago what life would look like now, I would have been completely wrong. So, I guess we’ll just have to wait and see what happens by 2030. I’ll let you know when we get there!
You can find out more about Hannah Webster by following her on Facebook and Instagram.
Do you also live with MS or another neurological condition and can relate to Hannah’s story? Share your experiences in the comments box, on social media or contact us to share your personal story.