In the middle of 2023, Lucy's life was full of promise. She was pursuing her primary education degree to become a qualified teacher, had an active social life, and, in her own words, was "loving life." But everything had changed when we sat down for this interview in November 2024.
In just over a year, Lucy's health had declined to the point where she had lost the ability to eat or drink without excruciating pain and vomiting, and the life she was once building had to be put on pause as she focused on finding answers, getting treatment, and adjusting to life with multiple chronic illnesses.
Although her health became unmanageable in 2023, Lucy's difficulties with her health had begun years earlier during her final year of A-Levels and she described how she was often too unwell to leave her room due to intense pain, overwhelming fatigue, and extreme dizziness. It was during this challenging time that Lucy also experienced her first major hospital admission. But unfortunately, instead of receiving the care she needed, medical professionals dismissed her symptoms as anxiety.
"As a teenage girl, I often heard comments like, 'It's all in your head,' or 'You're just anxious,'" she recalls, and in doing so, highlighting not only her individual struggles but also the broader issue many young women face when navigating the healthcare system with complex or elusive health concerns.
In our chat, Lucy shared one particular instance of this describing how in an incident where she was hospitalised for severe bleeding, doctors initially took her situation seriously and were ready to conduct a series of tests, including an endoscopy and a colonoscopy. However, this all changed when they looked at her medical history and saw she had previous diagnoses of anxiety and obsessive-compulsive disorder (OCD).
"Suddenly, my symptoms were brushed aside as being caused by mental health issues," she explains. "That was it - no more tests, no urgency to figure out what was wrong."
When her health deteriorated in 2023, and she found herself unable to tolerate food or drink, Lucy’s past made her reluctant to share her struggles, even with those closest to her. "I didn't even tell my mum that I had stopped eating or drinking because I thought no one would believe me," she confessed, showing just how impactful her previous dismissals had been.
Unfortunately, however, when Lucy did finally find the courage to speak up about her struggles, her fears were realised as she was once again met with scepticism from medical professionals. In our conversation, she describes the sense of frustration she experienced each time she found herself in Accident & Emergency due to her relentless vomiting, where she would be given fluids and sent home with instructions to reach out to eating disorder services.
After enduring a series of these frustrating experiences, Lucy and her family made the difficult decision to pursue private healthcare, which marked a turning point in her journey. The private consultant immediately recognised the seriousness of her condition and admitted her that same day for extensive testing. These tests revealed that Lucy's stomach was not functioning properly, leading the doctors to suspect that Lucy might have a condition known as Gastroparesis. This condition is characterised by a delay in gastric emptying, meaning that the stomach muscles do not effectively contract to move food into the small intestine. As a result, patients often experience symptoms such as nausea, vomiting, bloating, and abdominal pain.
To find out more about Gastroparesis, click the link below:
Gastroparesis
But the relief Lucy and her family felt at finally having a potential diagnosis was short-lived. While her insurance initially covered her stay at the private hospital, she soon had to be transferred back to the NHS for further treatment and it was during this transition that one of the first major disagreements between the two teams emerged. Based on their findings, the private consultant had recommended placing an NJ tube - a feeding tube that bypasses the stomach and delivers nutrition directly into the small intestine - however, the NHS team disagreed with this outlook and insisted instead on starting with an NG tube, which feeds directly into the stomach. This was concerning because if Lucy's stomach couldn't properly empty food, an NG tube would likely be ineffective or worsen her symptoms.
To Lucy, this decision felt like more than just a difference in medical opinion - it felt like her new team was beginning to doubt her all over again. That fear only grew when doctors once again began to suggest she was exaggerating her symptoms, this time even assigning staff to monitor her closely to try and "catch her out". To make things even more convoluted, the new ward she was placed in also had no designated doctor, meaning her care was handled by a constantly changing rotation of doctors - many of whom disagreed on both her diagnosis and treatment plan. Lucy shared one instance of where one doctor in charge for the week confidently diagnosed her with Superior Mesenteric Artery (SMA) Syndrome, a rare condition where the small intestine is compressed between two arteries. Yet, just a week later, another doctor dismissed the diagnosis entirely.
"It was an incredibly confusing time", Lucy summarised, highlighting how she felt she was back to square one, forced once again to fight for the care and answers she desperately needed.
The disconnect between Lucy and her medical team reached a critical point when they finally agreed to place a nasojejunal (NJ) tube before her discharge. However, just three months later, during a follow-up appointment, Lucy was informed that the doctors had decided they wanted to remove the tube again. This news shocked her and her family, especially since Lucy had still been unable to keep any food down since leaving the hospital. They argued that removing the tube would put her into a life-threatening crisis, and ultimately, the doctors reluctantly agreed to keep the tube in place.
However, this decision made it clear that the medical team didn't fully understand her condition or appreciate the urgency of her situation. This realisation served as the final straw for Lucy and her family, making it clear that they had no choice but to turn back to private healthcare if they were ever going to find the answers and treatment they desperately needed.
Through private care, Lucy saw a specialist who immediately recognised the severity of her symptoms and sent her to a neuro-gastroenterologist. After thoroughly reviewing her medical history and previous test results, he confirmed that her gastrointestinal issues were classic signs of Gastroparesis. However, he also noted that her heart rate was unusually high and suspected she might have Postural Orthostatic Tachycardia Syndrome (POTS) - a condition affecting the autonomic nervous system, which can cause a rapid heartbeat when standing, leading to dizziness, fatigue, and poor circulation.
During the consultation, the doctor asked if Lucy had ever heard of Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that affects collagen - the protein responsible for the strength and elasticity of the skin, joints, and internal organs - explaining that EDS is often linked to conditions like POTS and Gastroparesis. Although Lucy had heard of EDS through a friend, no doctor had ever suggested it as a possibility for her. The specialist noted that many of her symptoms - chronic pain, joint instability, digestive issues, and autonomic dysfunction -were characteristic of hypermobile Ehlers-Danlos Syndrome (hEDS).
While he couldn't provide an official diagnosis himself, he strongly suspected Lucy had EDS and also mentioned Mast Cell Activation Syndrome (MCAS), another condition frequently associated with EDS. MCAS occurs when mast cells, which regulate allergic responses, become overly reactive, releasing excessive inflammatory chemicals. This can trigger a wide range of symptoms, including hives, anaphylaxis, gastrointestinal distress, flushing, and neurological issues.
"When the doctor told me that my body could be reacting as if it were allergic to things - even when it wasn't - I was like, 'What?! That makes no sense!'" Lucy recalled. But in hindsight, it explained a lifetime of unexplained allergic reactions, food intolerances, and inflammatory symptoms she had previously ignored or dismissed.
Following this pivotal consultation, Lucy underwent extensive autonomic function tests, which confirmed she had POTS, along with additional complications such as blood pressure instability and abnormal sweating patterns - symptoms she hadn't even realised were connected! She was also diagnosed with hypermobile Ehlers-Danlos Syndrome and Mast Cell Activation Syndrome, along with other conditions, including Long Covid.
To find out more about Lucy's diagnoses, click the links below:
Postural Orthostatic Tachycardia Syndrome (POTS)
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Mast Cell Activation Syndrome (MCAS)
In January 2024, Lucy finally received the test she had been waiting for - a gastric emptying scan to confirm Gastroparesis. Unbeknownst to her, the consultant who had discharged her from her prolonged NHS hospital stay had referred her for this crucial test. Though the hospital performed only a one-hour scan (a shorter version of the typical test), the results were conclusive, and she finally received an official diagnosis of Gastroparesis.
After years of uncertainty and being dismissed by healthcare professionals, Lucy finally had several diagnoses that validated her struggles and confirmed that her symptoms were not simply "in her head." But as Lucy quickly realised, getting diagnosed was only one part of the battle. With no real cures for these conditions, she was left with a daunting question: "It was like 'great, now what?'"
To try and improve her condition, Lucy underwent two surgeries to help her stomach function more effectively. The first was G-POEM (Gastric Peroral Endoscopic Myotomy), a relatively new procedure based on traditional POEM surgery, which is used to treat achalasia - a condition where the oesophagus is too tight for food to pass properly. In Lucy’s case, the goal was to make digestion easier by cutting the muscle at the pylorus, the valve between the stomach and small intestine, so that food could move through more easily with gravity rather than relying on the muscle to push it through. The hope was that this would reduce the relentless vomiting and pain she experienced after eating due to her gastroparesis and her consultant was confident that the surgery could be a real turning point in her treatment.
At first, the surgery seemed successful. But when her consultant went back in to investigate after her symptoms failed to improve, he discovered the valve had tightened again as if the procedure had never happened. The decision was made to perform the surgery again in the hopes that a second attempt would achieve a more lasting result. However, although the surgical team observed her pylorus responding as intended during the operation, transitioning from fully constricted to wide open, unfortunately, in a follow-up scope, they discovered that the valve had closed once again. To make things even more challenging, Lucy also developed sepsis - a life-threatening infection - after the surgery.
Lucy's medical team is now conducting further tests to assess her nerve function and muscle control, trying to determine whether the issue lies in her stomach's ability to move food or in the neurological signals controlling those muscles.
For Lucy, one of the hardest parts of her condition has been the way it isolates her from everyday life. As a society, so much of socialising revolves around food, whether that be going out for meals, grabbing drinks with friends, celebrating birthdays over dinner. These are moments that people often take for granted, but for Lucy, they often feel out of reach.
"Food is such a social thing that being unable to eat or drink like everyone else can be really isolating," she explains, "You miss out on so much - not being able to go out for meals, have drinks, or do the normal things people my age are doing. I want to be able to be part of those experiences."
As Lucy's situation has become even more unpredictable, the effects on her life have grown even more intense. Along with her existing symptoms, she now faces the constant worry of her NJ tube dislodging due to her persistent vomiting - a complication that could leave her without any way to receive nutrition. If this happens, she has no choice but to go straight to the hospital and wait for the tube to be replaced, which can sometimes take days. If the wait exceeds five days, hospital policy requires her to stay as an inpatient for at least three more due to the refeeding protocol, adding even more disruption to her life.
The NJ tube, meant to be a temporary solution, has now been in place for a year with no clear long-term plan.
When asked how she feels about being left in this situation, Lucy explained, "There is an ongoing debate among my medical team - some believe I need a surgical feeding tube, like a PEG-J, while the dietitians worry it won't heal properly because of my EDS. Gastroenterology also has concerns, so I've been in limbo with this temporary NJ tube, which can dislodge at any time because of my vomiting."
This uncertainty looms over every aspect of her life. It has made it nearly impossible for her to commit to plans with friends or family, and consequently, invitations to outings have become less frequent, and the casual check-ins from friends have drastically reduced. Lucy knows it's not that the people in her life don't care; they just now naturally assume she won't be able to make it.
"When you have to turn down plans repeatedly, people eventually stop asking," she explains, "I understand why, it's not personal. But it's still hard."
For Lucy, this has been a painful reminder of what she's missing out on as she watches her friends and family continue their lives while she feels stuck. This sense of isolation is something many people in the chronic illness community know all too well.
Yet, despite the overwhelming challenges she has faced, Lucy remains determined to embrace life. "I've started to focus on what I do have, what I can still do, and I've realised that my life isn't over - it's just different. And I'm determined to make the most of it."
One of the ways she reclaims a sense of normalcy is by holding on to the experiences that bring her joy, even when they come at a cost. Food has always been something she loves, but now eating and drinking often leave her in pain or lead to sickness. Still, Lucy decided long ago that she wouldn't let that stop her.
"I'm really stubborn, I still eat and drink things despite the pain and vomiting because I genuinely love food," she admits, "So, I carry a sick bag around with me, and people will just have to deal with it!"
Lucy's determination and resilience shape how she approaches every aspect of her life. While her journey may look different from what she once imagined, she refuses to let her medical conditions dictate what she can and cannot enjoy. A perfect example came just weeks before our conversation - Lucy had been in the hospital, but as soon as she was discharged, she went straight to a McFly concert instead of heading home to rest.
"I woke up from an endoscopy, still completely out of it from the anaesthesia, and apparently, the first thing I said was, 'Thank you so much for this. I'm off to see McFly now!' The registrar just stared at me like, 'Okay… sure…' Poor guy must have been so confused!"
A passionate musician, Lucy has been pursuing a degree in primary education with a focus on music, hoping to one day teach and share her love of music with others. However, due to her unpredictable health, she could not complete her teaching placements, which meant she wouldn't graduate with Qualified Teacher Status. However, her university recognised her dedication and refused to let her hard work go unrecognised. They advocated for her at the highest levels, bending the rules to ensure she could still earn her degree. If her health improves, she plans to return later to complete a one-year PGCE to officially qualify as a teacher. This kind of support has been crucial for Lucy as she continues to push forward, and even during her hospital stays, she has managed to keep up with all of her assignments.
Although this last year was one of the most challenging periods of her life, Lucy is still set to graduate in July with a first, which reflects her determination and hard work!
The support of Lucy's friends and family has been her greatest lifeline. Throughout our conversation, she repeatedly highlights the kindness of all of her friends she's made at university, who have made her feel as if nothing has changed with her health, ensuring she always feels included, valued, and supported in every way.
Lucy with her friends, family and boyfriend.
But In our conversation, a few people in particular stood out as those she wanted to highlight - one of them being her best friend Zoe, who she originally met at university but their bond has only grew stronger as Lucy's health declined. Whether visiting Lucy in the hospital, making her laugh on difficult days, or treating her the way she always had, Zoe reminded Lucy that illness doesn’t have to push people away - it can also reveal who truly cares.
"It's the little things that mean the most," Lucy shared, “Zoe will do things like offer to get my medication for me. If I say I need to take it, she'll be like, 'Shall I do it for you?' and I'm just like, 'Yes! One less thing for me to do!"
But no one has fought harder for Lucy than her mum. From the very beginning, when doctors dismissed her symptoms, it was her mum who refused to take no for an answer. She attended every ward round, challenged every dismissal, and demanded action when Lucy was too weak to fight for herself. Lucy firmly believes that without her mother’s relentless advocacy, she would have been left without the care she desperately needed.
Her boyfriend has also been a constant source of support, standing by her through every setback and uncertainty. They had only been together a few months when Lucy’s health took a drastic turn, something that might have scared many people away, but instead, he stayed.
Living with a chronic illness can be overwhelming, not just physically but emotionally. Lucy describes how the endless medical appointments, hospital stays, and constant uncertainty sometimes feel like too much to bear, and she admitted that there have been many times when she has broken down from sheer exhaustion, struggling to keep going. However, knowing she has a solid support system has made her journey feel less lonely and easier to bear.
At the end of our conversation, Lucy was invited to offer a note of hope to those reading this who may be facing similar struggles. In line with everything she has shared, Lucy’s response was deeply personal, shaped by her experiences and the resilience she has built, and a reflection of the strength she has found through hardship, offering reassurance to anyone who may be feeling lost.
"One thing that has kept me going is asking myself, ‘If every day were like today, how much longer could I keep living like this?’ If the answer is ‘not long,’ I ask myself, ‘What can I change? What’s in my control? What isn’t? What do I need to accept?’" Lucy explains. "Not every day is going to be good. But on the bad days, I try to find small things that bring me joy - candles, colouring, listening to music - little things that remind me I’m more than my illness. The key is finding what defines you outside of being sick."
For those navigating their own challenges, her message is a reminder that even in the hardest moments, there is still hope to hold onto.
Thank you Lucy for sharing your inspiring story for the 'A Note of Hope' project!
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