Creating my MS support group helped bring over 600 people together

To celebrate World Friendship Day, we caught up with Amy Thompson, Founder of MS Together, a support group for people with MS, aged 18-35, to find out about what led her to set up the group and how it has led to new friendships.

I was diagnosed in April 2018, just after my 21st birthday. It started with me waking up one day with some numbness. My left leg was really numb and it felt a bit weird to walk on it. This got worse over about a week and I was finding it harder and harder to walk in a straight line and keep my balance. I went to see a doctor and he said that he thought it was nothing to worry about, it was probably a trapped nerve. He sent me for blood tests and a CT scan just to check that it was nothing more and those tests came back clear.

During this time, I developed new symptoms like pins and needles in my left arm and hand. I went back to the doctor and he thought I'd brought it on myself because I was anxious. I told him I didn't think that was the case and I thought it could be MS so I asked him, "Do you think it could be MS?" He just said, "No, you're too young and have no family history of it." He did agree to send me for an MRI scan to give me peace of mind though. I went for the scan and straight after I booked an appointment with a neurologist to go through the results. Straightaway the neurologist diagnosed me just from looking at those initial scans.

I wanted to open up about my MS so I told my close friends pretty much straight away. They were very understanding and supportive. They asked questions if they didn't understand something or just wanted to know more which was really nice to see.

Then I told wider friends via social media and again, most people were really supportive. There were a few who didn't really know how to deal with it and didn't really ask me much about it. I think they just felt like it was a bit too much for them to deal with. On the whole, my friends were great but it did make me realise who was a really good friend and who wasn't, I suppose.

When I was diagnosed, I was desperate to find other people with MS who I could talk to. To start with, I joined my local MS group and went along to a few meetings, but I was the youngest by about 40 years. Then I went to what was called a young person's MS group and I was still the youngest by about 20 years.

I was constantly searching on social media to try and find someone that I could relate to, but I didn't have much luck. The groups that I went to were really nice, but it just wasn't the support that I needed. I needed to speak to people that were in a similar time of life as me, doing similar things and feeling similar things.

I decided to start a blog ‘but you don't look ill' to try to be there for other younger people who had MS and offer my advice. Amazingly, I had about six people get in touch with me who were just really thankful that I'd written about MS and that I was there to talk to. Over the next few months, I got to know these people quite well and one day I suggested we start a small group chat.

That's basically where MS Together started but then from word of mouth, social media and blogs that I'd written, I slowly managed to reach more people. The group grew to about 50 people quite quickly and that's when I decided to set up things like the Facebook page.

The group has grown quite a lot since then, especially through things like word of mouth over lockdown. Now we have a Facebook page and a number of WhatsApp groups, as well as Twitter, Instagram and YouTube accounts with over 600 members in total.

The main one is definitely how much it's grown. When I setup the group, in a dream world, I hoped that I could help hundreds of people, but I never really saw that happening so quickly. It's so nice getting messages from people saying how we've helped them. That to me is a big achievement.

One of our other biggest achievements has been our fundraising challenges. Last year, we set up our very own fundraising event called one million steps for MS where 56 members from the group walked, ran or wheeled the equivalent of a million steps in 24 hours. We raised over £20,000 for the MS Society which was amazing. This year we decided to do it again but doubled the challenge so it was two million steps and we ended up raising over £37,000 for the MS Trust.

As you said, we were nominated for the National Diversity Awards 2021 and recently got shortlisted so we're in the top eight for the Community Organisation Award for Disability. I'll be attended the finals for that in February 2022 so that's very exciting and something I'm incredibly proud of.

That is probably my favourite thing about MS together and something that I really hope we can continue to do. Even as the group grows, it may sound like a cliché, but it really does feel like one big family. Although the majority of us haven't actually met in person, I think the main thing is that we all know we're there for each other and that's what a great friendship is built on.

I have met quite a few people from the group now and I've also developed an amazing friendship group from there. We've met up twice and have had a weekend away a few months ago, which was so lovely. There are lots of members meeting up all over the UK, creating their own friendships and that's something I want to encourage people to do as much as possible. As MS Together continues to grow, it is going to be harder for us all to do things together in person so having people making their own friendship groups from it is really important.

I think it's a different sort of friendship. When you have MS no one will ever completely understand what you go through, how you feel or the challenges that you face, unless they have MS themselves. That's what makes MS friendships even stronger, because we all just get it. We all have one massive thing in common and even though it affects us all differently, we know that we can talk to each other about it. No one will judge you, no one will question what you say and everyone will be there to support you in the best way they can. I think that's what makes MS friendships different and potentially stronger in a lot of ways.

In November we are having a big Christmas party which will be our first big in person meetup. There will be 50 of us meeting, which will be amazing. We're also hoping to do another fundraiser next year so we'll start planning that soon. Then of course, we've got the National Diversity Awards coming up too.

Looking ahead, one thing that I'm working on is a website for us. There are quite a few people that have requested to join the group don't have Facebook. At the moment, the main way to get involved is through Facebook but I want to make sure that anyone can join if they want to.

As I mentioned, something else I'm working on at the minute is trying to encourage people to create their own smaller groups, so I'm helping facilitate that. It would be good to do regional things rather than national just because of how big MS Together is now.

A group isn't for everyone, but you should definitely try to establish some sort of support network, especially with someone else that has MS. Having people of a similar age who really understand what you're going through can make a world of difference. I know if I'd had that from when I was diagnosed, it would have just changed my whole outlook.

I would also say try to take each day as it comes and don't put any unnecessary pressure on yourself. The main thing is learning to listen to your body because it will tell you everything you need to know such as when you need to stop or rest. Basically, just be kind to yourself and try and stay as positive as possible.

• MS Together on Facebook - If you've got MS and are aged 18-35, you can request to join Amy's group
• A-Z support groups - Information on different support groups and blogs written about life with MS
• National Diversity Awards website - Find out more about MS Together's award nomination