Young, Living with Ehlers Danlos Syndrome & Redefining Disability: Millie's Story
At just 25, Millie is already making waves as a chronic illness advocate, writer, speaker, and inclusive artist. Based in Berkshire, she’s turned the challenges of living with multiple complex health conditions into a mission to support and uplift others. Through her website she’s built a growing community where people with chronic illnesses can find resources, connection, and real talk about life with disability. Millie shares her journey with honesty and heart-showing what it truly means to live boldly with disability.
My Story
I’m Millie, I’m 25 and I wear a lot of hats - chronic illness advocate, writer, speaker, and inclusive artist. I live in Berkshire with my best friend and therapy dog, Ralph (you’ll never catch me out without him by my side).
I live with a mix of complex health conditions that have shaped the way I live, move, and work – but they’ve also shaped my purpose. That’s why I started my online business, to build a community for people with chronic illnesses where we can share support, resources, and honest conversations about what life with long-term health conditions is really like.
When I’m not juggling the ups and downs of my health, I love being creative. Writing has always been my thing, even though I’ve got severe dyslexia. It’s something I’ve worked hard to overcome, because I never wanted it to stop me sharing my voice. I’ve written articles and essays on resilience, adaptation, and life with complex health needs - and I’ve even started writing a book in my spare time.
Living With Complex Conditions
I live with several disabling conditions, including Ehlers-Danlos Syndrome, Gastroparesis, Postural Orthostatic Tachycardia Syndrome, and intestinal dysfunction. I rely on a jejunostomy feeding tube, a nasogastric drainage tube, and artificial nutrition via a pump that I’m connected to for 22 hours a day.
I first became ill as a teenager, but things got dramatically worse when I was 18. Getting diagnosed took years of pushing to be believed. These conditions impact every part of my life-pain, fatigue, digestion, mobility, but they’ve also pushed me to advocate for myself and others, and to build a life that feels honest and meaningful, even if it looks different than I imagined.
Finding Freedom
After months of being trapped in bed, a wheelchair gave me the chance to get out and rejoin the world instead of watching it through a hospital or bedroom window. It gave me a sense of life again. But it was also bittersweet. I grew up dancing six days a week and always used movement as a way to manage my mental health. Losing that freedom and seeing it replaced with a basic grey NHS stick felt like whiplash. I remember thinking, “I feel 25 going on 205.” It didn’t support me properly, physically or emotionally. I felt embarrassed and ashamed, like I’d somehow failed by needing it. Even though I knew mobility aids were helping me do more, it was hard to see past the stigma, especially when nothing about them reflected who I was.
Finding Cool Crutches was such a turning point. When I got my Wanderlust Walking Stick, I no longer had to hide my mobility aid or feel like it was something I should be ashamed of. It brought back a sense of personality and independence.
Living with chronic illness often means having so much taken out of your hands. You lose choice, control, and freedom over your own body and daily life. I don’t get to choose whether I need a mobility aid, it’s not optional, but I finally can choose what it looks like!
I feel less invisible and more like myself again.
Looking After My Mental Health
For me, it’s about creating space for both joy and grief. I speak openly about how tough it can be, but I also try to hold space for hope. I find peace in nature, creativity, and connecting with others who understand. I host a free monthly support group which is as much a safe space for me as it is those that came along.
Healing isn’t about keeping up, it’s about finding happiness within the limits your body gives you.
One of the things I love most is travelling with my boyfriend. My stick gives me the freedom to keep exploring, chase adventures, and feel part of the world again. I love the feeling of standing somewhere new, surrounded by vastness, and realising how small my problems can feel in the grand scheme of things.
Three Things That Make Living With a Disability Easier
Living with complex medical needs means relying on a lot of equipment, but I’ve found a few things that make daily life not just easier, but a bit more me:
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Tilly’s Tube Stand – This safely holds my feed and pump when I’m away from home, giving me more freedom to move comfortably and travel.
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Cheeky Tapes tube tape – I use this to secure my NG tube, and while it’s medical, it also brings joy. Wearing unicorns or glitter stars helps me reclaim identity in a clinical world.
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Cool Crutches – Having a mobility aid that reflects my personality has changed everything. I get to choose colour, design, and style AND I feel proud to use it.
Working With A Disability
Before my health declined, the only jobs I’d ever known were on stage or on set. I had work in dancing and TV and film! I moved out at 16 to train at Italia Conti, later studying at London Studio Centre. But during my final year, I ended up in intensive care for weeks after a major operation. I tried to stay in the industry by transitioning into screen work, taking short jobs when I could between hospital admissions. But once I had to start using an NG tube, everything changed. My agent dropped me, telling me I wouldn’t get booked with a visible tube on my face.
It shattered my confidence. I thought I’d never work again.
I didn't give up, and now I’m proudly signed with Zebedee Talent, an inclusive agency that sees me for who I am.
Outside of performing, I now run my online business , where I offer advocacy, write help-guides, run my support group and newsletter, and speak publicly on chronic illness and disability. I also volunteer with EDS UK as this is an association that's very close to my heart.
Dating With a Chronic Illness
I think it's important to remember - you are always enough!! You don’t need to be less sick to deserve love. The right person won’t see your condition as a burden-they’ll want to understand it, just like they’d want to know your favourite season or what makes you smile.
Be honest, but only at your own pace. Let people in when it feels safe, and know that your boundaries are valid and don't forget, communication is everything. Be open about what you need, whether it’s patience, flexibility, or kindness on a hard day. Never settle for someone who makes life harder. The right relationship should feel like a soft place to land, not another fight to be seen.
My partner and I were best friends for years. He was by my side through the good and bad, long before anything romantic began. I think that’s part of what makes our relationship so strong, he didn’t know the 'before' version of me. He met me exactly where I was, in the middle of medical tubes, mobility aids, and chaos, and never flinched. I never thought I’d be fully accepted like this, but I have been, and I’m really grateful for that.
Next Up
There’s so much I’m excited to keep building!
A big focus is growing my community, Finding Happiness, Together. Through a monthly support group, Facebook community, and regular newsletter, I aim to create a safe space for people living with long-term health conditions.
I’m also currently fundraising via JustGiving for private medical treatment not available through the NHS. Every donation helps improve my quality of life and the care I can receive.
Looking ahead, I’m open to anything that helps bring disabled voices into the spotlight. More than anything, I want to create a world that accepts people as they are.
Millie, thank you for sharing your journey with such honesty and courage. Your story shows us that even in challenge, there is creativity, connection, and hope.
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