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How a Rare Chronic Illness Left Me Unable to Play My Bagpipes

2 weeks ago
in Health, UK News
rare chronic illness bagpipes BBC
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Published: 18 February 2026. The English Chronicle Desk. The English Chronicle Online

For most who take up the bagpipes, the instrument is more than just music — it is identity, heritage and passion. But for 19‑year‑old Katie Robertson, from Carnoustie in Angus, Scotland, her lifelong love of piping has been put on hold by a rare and debilitating chronic illness that has robbed her of the physical ability to play. Her story, shared with BBC Scotland, highlights both the emotional toll of chronic medical conditions and the gaps in care for those living with under‑recognised disorders.

Known online as the Wheeled Piper, Katie has amassed thousands of followers for her bagpipe videos. She has been a wheelchair user since the age of seven due to earlier health issues including arthritis and scoliosis. Her early years were filled with practice, performances and plans to study piping at the Royal Conservatoire of Scotland in Glasgow — dreams she now faces postponing indefinitely.

Last summer, Katie began experiencing alarming new symptoms. “I just sat up one day and could feel my heart racing — it was thudding like it would come out of my chest,” she told the BBC. Alongside a racing heartbeat, she experienced severe dizziness, shortness of breath and overwhelming fatigue — symptoms that made sitting up unaided and playing her beloved bagpipes impossible.

After multiple doctor visits and tests that failed to provide answers, Katie was eventually diagnosed in December with Postural Tachycardia Syndrome (PoTS) — a rare condition in which the heart rate spikes abnormally when the body moves from sitting or lying down to standing, often accompanied by fainting, dizziness and chest pain.

PoTS is a little‑understood disorder that can be difficult to diagnose because it requires doctors to rule out a wide range of other conditions first. Katie described her diagnostic journey as being more informed by patient‑led online resources than by the medical professionals she encountered. “I was able to get more information from the PoTS website than anyone in the hospital,” she said.

Despite finally receiving a diagnosis, the reality for Katie — and many others with PoTS — is far from straightforward support. There are no dedicated PoTS specialists in Scotland, meaning she has been passed between departments rather than offered coordinated care. Her treatment plan continues to be managed by her GP, with ongoing heart‑monitoring tests and medication adjustments, but she says she is still struggling to find relief or clear direction in managing her condition.

The effects on her life have been profound. Katie’s fatigue and symptoms have made attending school difficult, forcing her to put her education — and her plans to gain qualifications to advance her piping — on hold. “It feels like my future is stuck on hold because I can’t leave my house,” she told the BBC.

For a young person whose identity has been intertwined with music and performance from an early age, the loss of the physical ability to play the bagpipes has been devastating. Yet she speaks about her journey with remarkable resilience, determined to continue advocating for her own care and hopeful that one day she will return to her instrument. “I will keep pushing through because the thought of playing my pipes again keeps me going,” she said.

Experts say that conditions like PoTS — part of a broader spectrum of autonomic nervous system dysfunctions — are often under‑recognised and poorly understood by clinicians, exacerbating the diagnostic odyssey for many sufferers. With symptoms that can mimic anxiety or be dismissed as stress‑related, patients frequently report feeling unheard or misdiagnosed before the correct condition is identified.

Katie’s story reflects a wider conversation about how rare and chronic illnesses are diagnosed and managed within health systems like the NHS, particularly in regions where specialists are scarce and general practitioners may not have in‑depth exposure to less common conditions. Patients and advocacy groups argue that better training, referral networks and specialised clinics are needed to support those with under‑recognised conditions.

Beyond the medical challenges, the emotional impact — especially for young people with creative and academic dreams — can be profound. Chronic illness often forces sudden lifestyle changes, challenging not only physical capabilities but also aspirations, identity and mental wellbeing. People like Katie must adapt to new realities while holding onto the passions that define them.

As Katie’s story spreads online and through media coverage, it has resonated with others facing similar battles — and has brought attention to the need for improved understanding and care for PoTS and other chronic conditions. Her message is one of resilience, reminding others struggling with health setbacks that their dreams and worth are not diminished by illness, even if the road to recovery is long and uncertain.

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