Leaders by Experience: shaping the future with younger voices
Amy was diagnosed with MS in 2018, just after her 21 birthday. She runs her own blog, 'But you don't look ill' and a support group for younger people with MS. She's our Digital Engagement Officer
I was diagnosed with MS in 2018, just after my 21 birthday. All I wanted to do was speak to other people in a similar situation.
I searched high and low on social media and found that there were barely any young people talking about their MS experiences.
So I set up my blog, ‘But you don’t look ill’, where I opened up about my experience of living with MS as a young person. The good, the bad and the ugly. Through doing this and through meeting other young people wanting to connect with others, I decided to set up my own young person’s support group.
Why are you taking part in Leaders by Experience?
When I set up my blog and my support group, MS Together, I honestly had no idea what I was doing. I didn’t know how to create a blog. I didn’t know how to manage a support group. All of it was pretty much one big learning curve, and I’m still learning even today! I’ve learned so much over the last few years, and I’ve had a number of people reach out to me to ask me how I did it. The truth is, it was all a bit of trial and error, but there are things I’ve learned that I believe could help other people.
I also think it’s important to gain knowledge from each other. I know there’s still so much I could learn. Leaders by Experience is a brilliant initiative and shows the MS Society’s dedication to coproduction and working with the community.
Why is it important that our services are co-designed by younger people?
For years, younger people have been underrepresented in the MS world. I think involving younger people from the start when services are being designed will make sure they are relevant and useful for them going forward.
I think co-design is essential. It shows that you’re not only listening to people, but you’re also empowering them to make a difference. That’s why everyone needs to have a voice in what the MS Society does.
Why do you think we need to improve diversity in co-production?
MS can affect anyone. It does not discriminate. And that’s why we need to make sure that we represent and involve the entire MS community in co-production.
We should be focusing on amplifying the voices of those who want to be heard, including those who are often ignored or excluded.
This will help ensure that resources are used to develop the services and support that people really want and need.
