Zoe shares how she’s defied doctors’ expectations since she was diagnosed with limb girdle muscular dystrophy aged eight. She reflects on university life and her career, running her own podcast and doing a TEDx Talk, as well as how she’s navigated her condition and marriage with her husband.
My parents were told LGMD would stop me living life: now I’m married, have a career and my own disability podcast
When I was diagnosed with limb girdle muscular dystrophy at eight years old, my parents were told a very different version of my future. They were told I’d likely be in a wheelchair by the age of nine, that I might lose the ability to swallow, that I’d struggle in mainstream education and probably never be able to work.
Now, at 27, I’m beyond grateful to say that doctor was wrong. I’m not saying life has been easy, but I wasn’t going to let my prognosis stop me from chasing my dreams.
I always knew I wanted to help people in my career
I studied Psychology at Edge Hill University. Although it was only about 40 minutes from home, it felt like a huge leap. I’d never lived away from home, and suddenly I was navigating independence alongside managing my health and fatigue. I won’t pretend it was easy; there were tough days where my body just didn’t cooperate, but I did it.
I was lucky to have incredible support from the university. Small things, like having a cleaner to help maintain my room and specialist equipment to study, made such a difference. Those adjustments meant I could focus on actually enjoying the experience.
And I really did enjoy it. I threw myself into Fresher’s Week, went to social events, made amazing friends and experienced university life in a way I’d worried might not be possible for me. The support allowed me to enjoy being there instead of just surviving it (although I did survive glandular fever along the way, which feels like a rite of passage!)
After graduating, I started working in the mental health field. My first role was with CAMHS, which came with an hour-long commute. I still don’t quite know how I managed it physically, but I coped for a while and I loved it.
I then went on to work at Alder Hey Children’s Hospital, which was surreal. It was the same place I had been treated as a child, but now I was on the other side, supporting young people and families. It felt meaningful in a way that’s hard to put into words.
Eventually, I had to take a step back. My health, combined with the demands of working in-person full time, led to burnout. That pause gave me the space to rethink what I needed and led me to where I am now; working at Muscular Dystrophy UK in a more flexible role that fits around my life.
I’m so pleased I can make others feel seen through my podcast
I realised early on that I wanted to help people feel less alone, especially in the way I’d sometimes felt. That’s what led me to start my podcast. People tell me they feel seen, heard and understood when they listen. Some have said it’s helped them accept themselves or feel less alone and that means everything to me. It’s also helped me talk about things I never thought I would, and in doing that, I’ve grown in confidence and self-acceptance too.
The podcast led me to delivering a TEDx talk. My talk focused on challenging society’s discomfort with disabled bodies. I spoke about my own experiences of having a PICC line, feeding tube and scoliosis, and how people often react with awkwardness when they see bodies that look different. I wanted to challenge that; remind people about the importance of shifting perceptions, encouraging kindness and that disability isn’t something to stare at or shy away from… it’s just part of who we are.
The right person will love you for you.
When I met my husband, I took things slowly regarding my condition. I didn’t sit him down for one big conversation. We just got to know each other, and he naturally came to understand my needs over time. We’ve now been together for seven years and got married last year.
There’s been times when I’ve been really unwell, and he’s been there through it all. When you’re in those vulnerable moments, it’s easy to think no one could love you like that, but I know now the right person will. When someone loves you, they just want to support you.
We now have personal assistants who support me during the day while he’s at work. That adjustment took time for both of us, but it’s easier now. It’s given me more independence and helped us find a better balance in our relationship.
Planning our wedding came with its own challenges. There was so much to think about: medication, feeding, accessibility, even finding a dress that wasn’t too heavy for me to stand up in. I walked down the aisle but used my wheelchair for the rest of the day to conserve energy. We adapted things where we needed to, and our day was perfect for us.
My parents never thought I’d be where I am today
Life isn’t perfect; there have been difficult periods and that won’t change. But those moments don’t define everything. If eight-year-old me could see my life now, she’d be amazed.
