Amy Thompson was enjoying life as a university student before seeking medical advice for symptoms that led to a diagnosis of multiple sclerosis (MS). The clumsy way she was treated prompted her to create a new support charity, MS Together.

Interview by Tom Jamison

Why start another MS charity, when there are other MS charities already operating?
I didn’t have a good (diagnosis) experience. They literally just said: ‘Yeah, you’ve got MS, here are some leaflets. An MS nurse will b be in touch’. I was sat there; I’d just turned 21. And I just thought, OK, I now don’t know what to do. 

All of that just made me think, if this is how everyone gets their diagnosis, something needs to change. That’s when I turned to social media and started searching frantically for people who were talking about MS, that were in a similar situation to me; young, or doing similar things as me, they’re still going out and enjoying themselves; that’s all I wanted to see. 

I just started documenting everything on my blog. So, I was just writing blogs on being at university, dating, hospital appointments, just anything.

How did the charity start?
When I realised that I could help people… I had so many people reaching out to me, saying, this is exactly what I needed to see, I just wanted to find someone else that was young, that was going through the same things as me, I’ve just been diagnosed, I’m 21, 22, 26, and so on, and I can really relate to your story. 

I ended up having pretty much the same conversation with every single person that I spoke with. They were all asking me the same things, such as, how do you deal with this? Or how do you do that? So, I was trying to cope with all of that while still trying to understand everything myself, because I didn’t have all the answers. 

I asked everyone’s permission to put all these young people that were living with MS into a group chat. I just said, I’ve been speaking with you all individually and I thought it’d be really nice for us all to connect. And that is literally where MS Together started. 

It started with around 10 people, literally just in a very informal WhatsApp group. In just over a year, it only grew to about 30 people. We weren’t promoting it in any other way at this point, it was just word of mouth, and I only mentioned it a few times on my blog. Then Covid happened and people really, really needed support and that is when we saw hundreds and hundreds of people finding us every day. 

I got made redundant at the very start of the pandemic, so I decided to just put my everything into making it an actual thing. And it just grew. We won a National Diversity Award based on what we did during Covid.

Being nominated for the National Diversity Award surprised me because I felt like we were just this little support group that was quite insignificant, compared to other big organisations. It was a big mindset shift because I realised how much we had benefited people. Winning the award made me think, right, I need to do something with this. It gave me the confidence to try to take it to the next level.

How do you make it all work? Many disabled people will be impressed with your enthusiasm – and also your energy…
I don’t know but I think you’ve got to fully believe in what you do. There have been times when I’m tired, I’m exhausted and I think, I can’t do this anymore. But then you always find something because you believe in it so much. At this stage, I also have to remind myself that I’m only one person and I can only do so much. So, if I am having a bad day, I just have to accept that I can’t do it and that’s OK – and I’ll pick it up when I’m better, perhaps next week, and we’ll continue. 

There have been times when I’ve worked and worked and worked and then crashed. So, I’ve learned from that.

What are your main aims for MS Together?
I think, even when I first started my blog, I thought that if I can just help one person not to feel how I felt, then I’ve done something good. 

I just want anyone that’s newly diagnosed and under the age of 35, to not feel like how I felt.

Visit: www.mstogether.org

ABOUT MS TOGETHER
MS Together is a charitable organisation aiming to make sure that you don’t have to face MS alone.

MS Together provides support services and advice for people affected by multiple sclerosis (MS), with a particular focus on people aged 18 – 35 living with MS.

There are over 130,000 people in the UK living with MS, with more than 100 people diagnosed each week. MS is most commonly diagnosed in people in their 20s and 30s and is the most common central nervous system condition in young adults. 

Become a member of the MS Together online community
MS Together provides private Facebook groups for people with MS, living in the UK and ROI, aged 18–35.

The private Facebook group enables members to connect with each other in an informal, yet safe way. Members can ask questions about MS, and other members who have lived similar experiences can share advice. You can also post anonymously, if you’d prefer.

MS Together also gives members the opportunity to connect with others who live locally to them, having set up subgroups for different regions in the UK: South West, South East, West Midlands, East Midlands, Anglia, North West, Yorks & Humber, North East, Scotland, Ireland and Wales.

One-to-one support
Members can also benefit from a one-to-one support service, where you can reach out to a trained mental health first aider. They are there to talk things through with you, listen to your concerns without judgment and suggest ideas that could help.

Find out more via: www.mstogether.org/our-serv

Able Magazine is official media partner with the National Diversity Awards and editor, Tom Jamison, is a trustee of MS Together.