Today, through the charity she founded, MS Together, she’s helping thousands of young adults build connections, access support and realise they’re not alone.
In this blog, Amy reflects on living with a hidden disability, the power of lived experience, and why she’s joining our Spokesperson Leadership Programme to strengthen her voice and create lasting change.
My diagnosis changed everything
“I was diagnosed with MS shortly after my 21st birthday, which completely changed my perspective on life. Alongside learning to live with a lifelong condition, I struggled to find support that reflected my experience as a young adult. Most services felt geared towards older people, and I often felt isolated and unrepresented.
To process everything I was experiencing, I began sharing my story on Instagram and TikTok through But You Don’t Look Ill. What started as a personal outlet quickly connected me with others living with invisible conditions who shared many of the same frustrations and experiences.
Sharing my story showed me the power of honest conversations. By speaking openly about disability, identity and inclusion, I’ve been able to challenge misconceptions, reduce stigma and help others feel less alone. It also reminded me that when people see someone else’s experience reflected back at them, they realise they’re not facing it on their own.
That journey led me to create MS Together in 2019. What began as an informal support group has grown into a national charity, creating opportunities for young adults with MS to connect, access support and find the community I wish had existed when I was first diagnosed.
The biggest challenge is that you can’t always see disability
One of the biggest barriers for people living with MS is that the condition often isn’t visible.
Because I don’t always ‘look ill’, there have been times when my symptoms or support needs have been questioned or dismissed. Living with a hidden disability often means constantly explaining yourself or feeling like you have to prove your condition is real. Those experiences can be just as exhausting as managing the condition itself.
Too many young disabled people continue to face gaps in accessible, age-appropriate support, particularly around mental health, employment and social isolation. Without the right support, it’s easy to feel like you’re navigating everything alone.
At the same time, grassroots organisations led by people with lived experience often face limited funding, limited capacity and fewer opportunities to influence mainstream media or policy. Yet these are the organisations that understand communities best because they’re built by the people they serve.
That’s something I’m passionate about changing.
I want to use media to create change
The mission of Sounddelivery Media’s Spokesperson Leadership Programme strongly aligns with my values, particularly its commitment to amplifying the voices of people with lived experience and creating more representative media conversations.
Media has the power to shape public understanding, influence policy and determine whose voices are heard. Too often, disabled people are spoken about rather than spoken with. I want to help change that by ensuring people with lived experience are at the centre of conversations that affect our lives.
Although storytelling and advocacy are already central to my work, I want to develop the skills and confidence to use the media even more strategically to influence policy, challenge misconceptions and drive systemic change.
I’m also excited to learn alongside other leaders with lived experience, share ideas and build a network of people working towards more inclusive and representative systems.
Creating a future where every young disabled person feels seen
Long term, I want lived experience to be recognised as expertise across healthcare, policy and the media. The people most affected by decisions should be at the centre of shaping them.
I’ve learned that leadership isn’t about having all the answers. It’s about creating spaces where other people feel heard, believed and empowered to share their own experiences. That’s what I hope to continue building through my work.
If a young person is diagnosed with MS tomorrow, I want them to know they aren’t alone. I want them to find a community that understands them, see people like themselves represented in public conversations, and feel confident that their voice matters. I also want every young adult living with a hidden disability to feel seen, supported and empowered to advocate for the change they deserve.
That’s the future I’m working towards, and I’m excited to continue developing the skills to help make it a reality.”
About the Author
Amy is an award-winning charity founder, content creator, and advocate who is passionate about improving the lives of people with disabilities. After being diagnosed with multiple sclerosis at 21, I began sharing my experiences through her platform ‘But You Don’t Look Ill‘, raising awareness of invisible conditions and building a supportive online community.
Amy went on to found MS Together, a national charity supporting young people with MS across the UK&I through peer support, events, and mental health services.