Rosie’s Inspiring Interview: "I still get moments of sadness and grief for the life I could’ve had if I weren't chronically ill...But I’m now able to look towards the future!"
- Ellie Howe
- Mar 3, 2023
- 9 min read
Updated: Apr 14
Before A Note of Hope became a dedicated blog for sharing the stories of those living with chronic illness, it began as something much smaller – specifically, an Instagram support group where members sent cards to one another for birthdays, milestones, or simply to offer a bit of encouragement on a hard day.
One of our earliest members was Rosie, and, therefore, it only felt right that she should be our first inspiring interview.
Once an avid equestrian, she spent her youth travelling the world as part of her family’s polo business. But when her health began to deteriorate, she was forced to walk away from the life she had always known and, in her own words, “lost everything”. Now, after years spent grieving the loss of her old life, Rosie is starting to find a new sense of purpose and perspective.
“It’s okay for things to change,” she says. “Just because you envisaged your life going one way doesn’t mean it can’t be great when it turns out differently.”
This is Rosie's story.
Rosie's Diagnoses: Hypermobile EDS, POTS, MCAS, and Fibromyalgia...
Although Rosie has had various health issues from the day she was born, for years doctors dismissed her symptoms - with one even going as far as suggesting that she should be put in a mental hospital. In her interview for A Note of Hope, Rosie sums up her diagnosis journey as “long, exhausting, and traumatic”, a sentiment many in the chronic illness community can unfortunately relate to. It wasn’t until her twenties, when her health took a serious turn, that Rosie finally got some answers.
In early 2016, Rosie lost the use of her legs for four months. It was only after she became too weak to move that doctors finally diagnosed her with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder that affects collagen production in the body. Collagen is a crucial protein that provides strength and structure to connective tissues, including the skin, joints, and blood vessels. With hEDS, Rosie’s connective tissues are too lax to properly support her joints, making them prone to frequent subluxations and dislocations. This causes chronic pain, instability, and severe fatigue, as her muscles have to work overtime to compensate for the lack of structural support.
Along with hEDS, Rosie was also diagnosed with several co-morbid conditions, including Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and Fibromyalgia, each adding another layer of difficulty to her daily life.
Mast Cell Activation Syndrome (MCAS) is a disorder where the body’s mast cells, which are part of the immune system, become overactive and release excessive amounts of histamine and other chemicals. This can cause a wide range of allergic-like reactions, including hives, swelling, difficulty breathing, and digestive issues. Rosie has to be extremely cautious with what she eats, as even common foods like oranges, apples, and onions can trigger severe reactions for her. As well as this, environmental factors such as temperature changes or strong smells can also provoke symptoms, making her constantly on edge that she may be at risk of a reaction.
Postural Orthostatic Tachycardia Syndrome (POTS) is a disorder that affects circulation and the autonomic nervous system, which controls involuntary bodily functions like heart rate and blood pressure. In Rosie’s case, when she stands up, her blood vessels don’t properly regulate blood flow, causing a rapid increase in heart rate. This leads to dizziness, light headedness, fainting, and extreme fatigue. Even simple activities like standing in line or taking a shower can leave her feeling weak and drained.
Fibromyalgia is a chronic pain condition that affects the nervous system, causing widespread musculoskeletal pain, tenderness, and heightened sensitivity to touch. Rosie experiences persistent pain throughout her body, along with extreme fatigue and cognitive difficulties often referred to as ‘brain fog’. Sleep disturbances are also a common symptom, meaning that even after a full night’s rest, she often wakes up feeling exhausted.
To find out more about Rosie's diagnoses, click the links below:
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder causing joint hypermobility, chronic pain, and fragile skin.
Postural Orthostatic Tachycardia Syndrome (POTS)
Mast Cell Activation Syndrome (MCAS)
Fibromyalgia
A Life Left Behind: "When I became unwell, I lost everything..."
Rosie explains that the hardest part of it all has been adjusting to the limitations her conditions have placed on her life, saying, “Before my health started to deteriorate, I was really enjoying my life.” With heritage from Argentina and growing up in the English countryside, Rosie’s family was deeply involved in the polo industry and ran a business centred around horses. Rosie also has three horses of her own, Lolita, Minnie, and Domino, which she has had since she was a child. Throughout her interview, Rosie emphasises how her ponies weren’t just a part of her life, they were (and are) her world.
From a young age, she spent nearly all of her time riding, caring for her horses, and competing in polo matches. Her passion for the sport took her all over the UK, and she even had the opportunity to travel internationally to America and Argentina. When she was old enough, Rosie naturally stepped into a role within the family business, where she found fulfilment in teaching children how to ride and play polo.
“But when I became unwell, I lost everything,” Rosie explains. “Having to step back from riding, something I was both good at and deeply loved, was the hardest thing I have ever had to do.”
Going from a highly active and fulfilling life to suddenly losing the use of her legs was absolutely devastating for Rosie and she describes how losing that life, the one she had always known and thrived in, was just as painful as the physical symptoms she endured. For a long time after this, Rosie relied on crutches full-time and had very little independence. Even the simplest outings became a challenge, requiring careful planning to ensure places were accessible without too many stairs or steps, making sure she got enough rest beforehand, and taking the right medications to make it through the outing. It was a stark contrast to the life she once had, where she travelled the world playing a competitive sport and worked closely with the animals she loved.
What made this even more difficult was how deeply intertwined her work, hobbies, and social life had been. When she lost one, she lost them all, highlighting just how isolating chronic illness can be. Before she got sick, she had an active and bustling social life, but overnight, everything disappeared. Even now, with her health more stable, some of her friendships have never returned to what they once were.
“I spent so many years on my own, pushing away the idea of friendship because of the hurt I felt from losing my old friends,” Rosie explains, “I know it’s hard for the people I knew before to see me now, they struggle to know what to say or how to handle it, and sometimes people don’t recognise me because my illnesses and the treatments I’ve needed have changed the way I look.”
It took Rosie many years to accept her health problems and the impact they have had on her life. A few years ago, she even reached a point where she was seriously considering ending it all.
“I have always found it really hard to let go of the vision and dreams I had for my future,” she admits. “Even though it’s been six years since I first received my diagnoses, I still struggle with the anger and sadness of that loss.”
Finding Light in the Darkness: "I'm so glad I found the strength to keep fighting."
But despite everything, she found the strength to keep fighting. Rosie worked incredibly hard to regain some of her independence and in 2022 she even reached a point where she no longer had to completely rely on crutches or mobility aids. She found an incredible Pilates teacher who played a key role in her recovery and after two years of dedicated sessions every other week, she finally regained enough strength to hold herself up without mobility aids.
“I'll never forget the first time I walked without my crutches,” Rosie recalls, “my dad took me to watch a polo match at the club where I used to play. I was nervous about leaving my crutches in the car but decided to be brave. I walked in and everyone was so excited and couldn’t believe that I was walking freely - but I don’t think anyone was more excited than me!”
Since then, Rosie has worked hard every day to maintain her strength and, although she still relies on her crutches during flares, she has never taken for granted the simple ability to move freely again.
With some of her independence regained, she began volunteering at her local National Trust site, which has become an incredible source of joy. A naturally creative person, Rosie thrives in helping the team organise fundraising events and is also playing a key role in improving accessibility.
“After being stuck at home for so long, it’s been amazing to put myself back out there doing something I enjoy,” she says. “I’m a very social person, and I’ve really thrived being back out in the world - welcoming visitors, connecting with people, and forming relationships with other staff and volunteers.”
As well as her volunteering, Rosie has also enrolled in short courses and other educational opportunities. This experience has been a huge step forward for Rosie, as It was during her final year of secondary school that Rosie’s health initially began to deteriorate, and her uncontrolled symptoms caused her to miss many classes. But rather than receiving support, she faced frustration and anger from teachers and classmates who just didn’t understand her struggles.
“In the end, I came to hate school,” she says, “and I’ve been anxious about returning to any environment like that ever since.”
But going back to studying has allowed Rosie to explore new options that fit her needs and helped her rediscover parts of herself she thought she had lost.
“I had spent my whole life training for a role in our family business, so stepping into something new was really scary,” she admits. “But I’ve found it to be exciting and rewarding in ways I never imagined.”
'Rosie's Ponies': "My love for the outdoors and my animals has remained constant."
Over time, Rosie has started reconnecting with parts of herself she once thought she had to leave behind. She’s come to realise that her old life and new life don’t have to be separate - she can carry both with her. Throughout everything, one thing that has remained constant is her deep love for her animals, who have brought her comfort, purpose, and joy during even the hardest moments.
“When my health was at its lowest a few years ago, and I was missing spending time with my horses, we bought a chicken coop for the back garden and 6 chickens.” Rosie explained, “It gave me a reason to get out of bed in the morning and I would often just go and sit with them. It was something so small, yet at my worst it was enough to keep me holding on.”
Now that her health is more stable and she’s regained some mobility, Rosie is able to spend time with her horses again, and even go on gentle rides, which is a huge milestone in her recovery. She has also started a TikTok account, aptly named '@RosiesPonies', to document her journey as an equestrian living with chronic illness, while using her platform to advocate for greater accessibility in the equestrian world.
In one video, she highlighted the lack of accessibility at a popular horse show, where she discovered that participants were being charged an extra fee to add ramps or other accommodations to their stalls. Since speaking out, several brands have reached out to her for advice on how to be more inclusive at future events.
It’s not quite the life she once pictured for herself, but Rosie is slowly finding her way back into the world she grew up in - not just as a rider, but as someone using her voice and experience to make a difference. Although her role may look different now, it is no less meaningful.
Rosie's 'Note of Hope': "I’m proud of myself for being able to shift my mindset and find a more positive way of seeing things."
Looking back on the early days of her journey - when she was newly diagnosed, unable to use her legs, and convinced she would never ride again - Rosie recognises just how far she’s come. At the end of her interview, she was invited to share a note of hope for anyone navigating a similar journey and struggling to find light in the darkness, as she once did.
“I’ve always tried to find joy in something every single day,” she says. “Especially when my symptoms are flaring or I’m just having a bad day, I try to hold on to the smallest things that bring me happiness - whether that’s popping out to the shops, having a cup of tea with my mum, or being able to ride my horses with my dad.”
She continues, “I still get moments of sadness and grief for the life I could’ve had, I don’t think that will ever completely go away. But I’m now able to look towards the future - something I couldn’t do before. I’m proud of myself for being able to shift my mindset and find a more positive way of seeing things.”
Thank you Rosie for sharing your inspiring story for the 'A Note of Hope' project!
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