How My MS Journey Led to Founding a Charity

I was diagnosed with multiple sclerosis (MS) just after my 21st birthday back in 2018. I was actually on my year abroad from university, living and working in Paris – having the best year of my life.

Experiencing Symptoms

From one day to the next, I started to experience symptoms which involved numbness, fatigue, difficulty walking, and poor balance. It took about a week for me to pluck up the courage to go and see a doctor, and I was terrified. The doctor himself actually didn’t seem too concerned and told me “it was probably just a trapped nerve or something”. He sent me for a CT scan and blood test just to double check but basically told me not to worry.

New Symptoms and Misdiagnosis

I went for those tests and a few days later I developed a new symptom, which was pins and needles in my arm. This was one of my weirdest symptoms because it felt like hundreds of tiny ants were crawling under my skin – I now know that this was nerve pain. I went back to the doctor with this new symptom and to discuss the results from my tests. He explained that the tests came back clear and that he thought I’d “likely brought on the new symptom myself because I was anxious”. I insisted that I really felt like it was more than what he was saying. I’d been doing some googling (which I definitely wouldn’t recommend), and I remember actually asking the doctor if he thought it could be MS, but he straight away said I was “far too young to have MS”. After a lot of back and forth, I managed to get myself booked in for an MRI scan.

Photo of Amy smiling at the camera, she has long blonder hair with natural waves

The MRI Scan and Diagnosis

I went for the scan not really knowing what to expect or how to feel. I was in a different country, away from friends and family, experiencing the scariest symptoms I’d ever had. After my scan, I was told to book an appointment with a neurologist, so at this point, I decided to fly back to the UK. After seeing a neurologist in the UK, I was quickly diagnosed with MS. There was a lot of shock, relief, confusion, and worry for my future.

Seeking Support and Starting ‘But You Don’t Look Ill’

I started searching online for support – I wanted to see and speak to someone like me, someone I could relate to. I searched charity websites and social media but felt there was little representation of young adults living with the condition and I couldn’t find anyone to reach out to. I decided I wanted to try and be that person for someone else, so in 2019 I started sharing my story through my platform ‘But You Don’t Look Ill’. Here, I talked about everything to do with my MS journey – my time at university, choosing a treatment, dealing with invisible symptoms, dating, travelling, and so much more. I also shared my story with MS charities and did a number of media interviews to try and raise awareness.

Building a Support Group

A number of people started to reach out to me – to thank me for sharing my story and to tell me how they had also been looking for someone who they could relate to talking about MS. I decided to start a very informal support group for young adults living with MS because I really felt like there were so many people like me who needed specific support tailored to them. This began with a group chat and over the next year, this grew to around 200 people aged 18-35 by the end of 2020.

Growing MS Together

In 2020 and 2021, we supported that community throughout the COVID-19 pandemic through our online support platform and weekly virtual events. This is where we began to see the real need for this kind of social support. MS Together grew a lot during this year and I think it was a real help to so many people during a very dark time.

Achievements and Recognition

In 2022, we were awarded a National Diversity Award for the work we did during the pandemic and at the end of 2022, we became a registered charity. As a charity, MS Together exists to provide services of advice and support to people affected by MS with a particular focus on people aged 18-35 living with MS in the UK and Ireland.

Since then, we have received funding to help grow our services, organised a number of successful fundraisers, and were recognised as one of the 7 main MS charities in the UK when we got asked to join the MS Awareness Week partnership. We also collaborated with a number of healthcare professionals and MS organisations on information webinars which got some brilliant feedback. We hosted our launch event which brought together people with MS, representatives from MS organisations, and HCPs to talk about the need for our services. Most recently, we were mentioned on The One Show.

Our Services

The services we now provide are:

Online Support Network: Where people aged 18-35 can meet people like them and get the answers to any questions they might have.
Virtual Social Events: Organised every month (games night, welcome call, book club).
Informative Webinars: Every month or so (guest speakers, organisations, topics requested by the community).
Regional Group Support: Smaller support groups for people who want to connect with people who live locally to them.
In-Person Events: Organised at different locations across the UK – fun and informative.
One-to-One Support Service: People can reach out to a volunteer who is trained in mental health first aid and soon to be launching one-to-one and group counselling service.
Pilot Counselling Service: One-to-one and group counselling.

Some of our services are only open to people aged 18-35 but our information, our webinars, and our one-to-one support service are open to anyone affected by MS.

My Role and Personal MS Journey

Up until June this year, MS Together was something I managed in my spare time, alongside full-time work. But now I am delighted to announce that I am now officially the CEO of MS Together and it’s now my job to help grow and manage the charity.

With regards to my personal MS journey, I’m doing really well. The first few years were very difficult to deal with and I think I was definitely in denial for quite some time. However, I would now say I’m in such a good place – mentally and physically. And it’s a bit strange to say, but I’m probably healthier and happier than ever before. I’m travelling lots which is a massive passion of mine and I’ve just started training for my second marathon.

A Message to Others

To anyone reading this who might be feeling a bit scared or worried about the future, I would say that things might not always be easy but they do get easier to deal with.