I’m often asked about my multiple sclerosis (MS) diagnosis, so I’m going to take you right back to the beginning. So let’s go back to 2018.

My whole MS journey actually started in Paris. I was living and working there on my year abroad from University, and I was honestly having the time of my life. In February 2018, I was spending the weekend with a friend and one morning I woke up with a very strange feeling in my left leg. It felt slightly numb and pretty detached from the rest of my body. I decided to get on with my weekend and ignore it as much as I could, but over the next few days it got worse…

This photo was taken a few days after I started feeling unwell.

I felt so poorly this day but had been invited to Paris Fashion Week so had to try and put on a brave face.

So a few days went by and my symptoms were actually getting worse. I was exhausted all the time, had no balance or coordination and I was struggling to walk. When I could no longer ignore what was going on, I spoke to my manager at the time and asked if she could put me in touch with a doctor. She quickly organised an appointment for me.

By the time the appointment came, my symptoms had started to gradually improve. I explained to the doctor what had been happening over the last week or so but he didn’t seem concerned. He said:

“It’s more than likely nothing to worry about and probably just a trapped nerve or something.”

But he did send me for CT scan and some blood tests. I went to get these done and a few days later the results came back clear. In the meantime, I had a new symptom in my left arm which I can only describe as a mixture of pins and needles and lots of tiny ants crawling under my skin. I went back to the doctor to discuss my test results and to tell him about this new symptom. He then said:

“I think you’ve probably brought on this new symptom because you’re anxious. Again, I don’t think it’s anything to worry about.”

I’d been doing some googling by this point because I could just tell something was wrong. And the results kept coming back with multiple sclerosis or a brain tumor. I knew I had to get some answers so I decided to ask the doctor whether he thought it could be MS. He replied with:

“No. You’re far too young for that.”

After persisting that what I was experiencing was more than a trapped nerve, the doctor decided to send me for an MRI scan, to - in his words - give me peace of mind. I went for the scan a few days later and afterwards got handed a booklet with all my brain scan images inside. I had a look but obviously didn’t know what I was looking at or looking for. I was told by the radiology staff that I needed to book an appointment with a neurologist. At this point, I decided I needed to go back to the UK. I wanted to be with my family but I also wanted to speak to a different doctor. So, I flew home.

I wanted answers quickly so I decided to go and see a neurologist privately and sure enough, a few minutes into that appointment, I was diagnosed with MS, just after my 21st birthday in April 2018. I was simply handed a few leaflets and told that an MS nurse would be in touch.

I’m not really sure how I felt when I got the diagnosis. I think there was a bit of relief, a bit of shock and a whole load of uncertainty. What I do know is I had SO many questions.

How will I tell my friends and family?
Will I be able to have children?
Can I still have the career I want to have?
Will I still be able to travel and see the world?
What will this mean for my future?

I had a week at home to process the news and spend time with my family, but I then decided I wanted to go back to Paris to finish my year abroad. The next few months were incredibly fun but I also realise at this point I was very much in denial. I wanted to almost forget about this diagnosis and just get on with my life. I felt pretty positive about everything when I returned back to the UK and I signed up for a skydive to raise money for an MS charity. I used this fundraiser to publicly announce my diagnosis to the world. And it made me feel better… at least for a while. However, when I saw people in person for the first time after they had found out about my diagnosis, I was met with comments like:

“You look so well…”
“I thought you would be using a wheelchair.”
“But you don’t look ill?”

In September 2018, I started my final year of university. But it was also the month that I started my first disease modifying therapy (DMT) to help manage my MS. And looking back, those last few months of 2018 were incredibly challenging for me. I lost a lot of weight, I felt unwell all the time and I was struggling to do so many things. I think this was when I actually started to process my diagnosis a bit more and it really was a very difficult time.

Things got better in early 2019. I started tolerating my treatment a bit better which meant life began to feel a bit more ‘normal’ again.

I struggled my way through my final assessments and exams and managed to graduate with a 2:1 in French and Business Management. Woo!

During my final year, I was also desperately trying to find other young people living with MS. I searched social media and MS charity websites and I went to local meet ups for people living with MS. But I just couldn’t find anyone who I could relate to. All the stories I came across and everyone I met seemed to be at least 30 years older than me. I knew that there must be people out there, so I decided to share my story. I started a blog and social media channels to share everything about my MS journey. I focused on the fact that my condition was chronic and ‘invisible’ for the most part, and I appropriately named it ‘But you don’t look ill’.

This blog is actually a replacement blog as my old blog got deleted without notice. But I still have access to a lot of the pieces I wrote so I’m going to slowly start uploading them.

Anyway, I shared everything - how I was getting on with my treatment, my mental health, my dating life, and so much more. And people started reaching out. People in their teens, 20’s, 30’s - all thanking me for sharing my story.

Over the next year I continued to grow my platforms and I also shared other people’s stories as it became very clear to me that people with other chronic conditions like Endometriosis, Chronic Fatigue Syndrome, Fibromyalgia, etc were also poorly represented. I began to get asked to share my story through MS campaigns, media interviews and writing articles. The more I shared, the more people reached out. And I began to realise I was very much not alone in needing support as a young adult living with MS.

By the end of 2019, I’d found a number of new virtual friends who all had MS. I’d decided to put them all in a group chat so we could all connect and have our own little support network. But, the group quickly began to grow - pretty much just through word of mouth. So, I decided to make things a little bit more formal. I set up a private Facebook community page and more and more people started to find us.

I created a name (MS Friends which was later rebranded to MS Together) and some branding and started advertising what we were doing. We started organising small meet ups and we all made some genuine friendships. Then we all know what happened in 2020. The COVID-19 pandemic came along and I unfortunately lost my job pretty early on. I suddenly had loads of time on my hands and I decided to put my all into MS Together.

I got a team of volunteers together and we started organising multiple virtual events per week to keep people going. MS Together grew massively between 2020 and 2021, and in February 2021 we were awarded the Community Organisation Award for Disability at the National Diversity Awards for our work during the pandemic. I think it was then when I realised I really needed to make something of MS Together and I soon started looking into becoming a registered charity.

We became a registered charity in late 2022 - you should go and check out our website www.mstogether.org. Our charitable purpose is to provide services of advice and support to people affected by MS, with a particular focus on those aged 18-35 living with MS in the UK.

Today, we support over 1,500 young adults living with MS through our online community, virtual events and webinars, in-person events and our mental health services. We’re growing everyday and I’m incredibly proud to be providing something that I know would’ve massively helped 21 year old me back in 2018.

So, I guess that brings you up to date with my MS journey so far. Although there’s been a lot of other highs and lows in between (which I’ll save for future blogs) but to give you a little spoiler, I’ll be talking about:

Working with MS
Exercise and diet
The ‘invisible’ side of MS
How to advocate for yourself and others
How to support someone with MS (for friends, family members, carers)
Relationships
Things I’ve learned since being diagnosed with MS
How to tell someone you have MS
Mental health
Travelling with MS

I’ve now been diagnosed for 5 years, nearly 6 and I don’t really know where the time has gone. But what I do know is, things have very much got better for me. I now fully accept my diagnosis and although there will inevitably be bumps in the road, I know I’m doing my best to live well with MS.

Thank you for reading this very long blog!

Bye for now,
Amy x

My mS journey so far

Making the invisible, visible