Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am grateful to share Poppy’s story for the ‘A Note of Hope’ project. Poppy connected with our project through Instagram and completed our standard questionnaire to share her journey with multiple chronic illnesses, including Low Phospholipid Associated Cholestasis, Functional Neurological Disorder, and Fibromyalgia. Writing about Poppy’s journey has been a humbling and profoundly inspiring experience. What stood out to me most in sharing Poppy's journey was her ability to find light in even the darkest moments - Her story, while marked by the relentless challenges of chronic illness, is ultimately one of resilience, hope, and unwavering love.”
"I've always struggled with my health since I was little but it took me a very long time to get anyone to take me seriously, until I was around 19 and I collapsed and lost the ability to walk and talk."
A Note of Hope Inspiring Interviewee Poppy leads a life that, to many, might seem ordinary at first glance. She is a devoted fiancé, a loving mother, a caring daughter, a cherished auntie, and a loyal best friend. Her days are filled with gardening, spa visits, and the simple joys of sleeping in. But beneath the surface lies a story of struggle and perseverance—a story of living with multiple chronic illnesses.
Poppy's battle with her health began early. As a child, she frequently felt unwell, but it wasn't until she was 19 that the severity of her condition became undeniable. After collapsing and temporarily losing the ability to walk and talk, she embarked on a long and arduous journey to find answers. Yet, it would take years, countless doctors, and endless tests before Poppy began to piece together the puzzle of her health.
At 25, Poppy's pregnancy with her son triggered a cascade of health problems, sending her body into turmoil. This marked the beginning of a new chapter in her life, one filled with pain, uncertainty, and a litany of medical diagnoses. Poppy now lives with multiple chronic conditions, each contributing to the complex web of symptoms that shape her daily life.
Among them is Low phospholipid-associated cholestasis, a rare genetic liver disorder which, although she had lived with the condition her entire life, its presence went undetected until nearly five years ago, when her pregnancy triggered the onset of severe symptoms. The pregnancy marked a turning point, as Poppy began to experience an overwhelming array of symptoms that included severe stomach, chest, and back pain, as well as intense nausea, vomiting, and digestive issues. These symptoms were so debilitating that they disrupted her daily life and made it impossible to ignore that something was seriously wrong.
Despite the severity of her symptoms, it took approximately three years of extensive testing and consultations with various specialists to arrive at a diagnosis finally. For much of that time, Poppy was labelled a "medical mystery" as doctors struggled to pinpoint the cause of her suffering.
LPAC, as Poppy discovered, is a rare genetic liver disorder that affects the liver's ability to secrete bile due to a deficiency in phospholipids. This deficiency leads to cholestasis, where bile flow is impaired, causing various symptoms. Alongside the severe pain and digestive issues, Poppy also learned that LPAC could lead to complications like gallstones, which are common due to the altered bile composition. Managing this chronic condition has required ongoing treatment and careful monitoring, but knowing the cause of her symptoms has allowed Poppy to approach her health with more clarity and determination.
The diagnosis of LPAC came as a bittersweet revelation. On one hand, it was a relief to finally have a name for the condition that had caused her so much pain and confusion. On the other hand, learning that the condition was genetic and had been with her all along brought a new layer of complexity to her understanding of her health.
Poppy's health journey took another complicated turn in 2022 when she was diagnosed with Functional Neurological Disorder (FND), a condition that disrupts the nervous system's ability to function correctly. FND manifests in a variety of ways, often mimicking other neurological disorders, which makes diagnosis particularly challenging. For Poppy, the symptoms have been distressingly real—she experiences significant pain and tremors and has limited mobility in her left leg. Despite the official diagnosis, Poppy remains uncertain about its accuracy, as FND is known for its elusive and sometimes misunderstood nature. Nevertheless, the impact on her daily life is undeniable, adding yet another layer of complexity to her already intricate health struggles.
Compounding these challenges are the migraines that have plagued Poppy since childhood. She recalls, "I think I was around 8 or 9 years old" when these severe headaches first began. Migraines have been a constant and unwelcome companion, characterised by debilitating symptoms such as loss of vision, severe head and neck pain, sickness, and vertigo. Only in recent years has Poppy been able to access proper treatment for her migraines, but despite medical intervention, these episodes remain a formidable foe, disrupting her life with little warning.
In the years spanning 2022 to 2023, Poppy received yet another diagnosis: Fibromyalgia, a condition marked by widespread pain, joint stiffness, and chronic fatigue. Fibromyalgia is a complex disorder that affects the musculoskeletal system, causing pain and tenderness throughout the body. Although her doctors believe that Poppy has lived with fibromyalgia for most of her life, it is only in recent years that the full scope of its impact has become evident. The chronic pain and fatigue associated with fibromyalgia add to the overwhelming physical burden Poppy already carries.
These conditions are just a few of the many health issues Poppy faces daily. She also contends with asthma, which complicates her breathing, and bilateral hearing loss, which affects her ability to hear. Additionally, she battles pernicious anaemia, a condition that impairs her body's ability to absorb vitamin B12, leading to severe fatigue and other neurological issues. On top of these physical ailments, Poppy manages the mental health challenges of Obsessive-Compulsive Disorder (OCD) and Generalised Anxiety Disorder (GAD), both of which contribute to her overall stress and complicate her day-to-day life. The chronic pain she endures from multiple sources adds yet another layer of difficulty, making even simple daily tasks a constant struggle.
To find out more about Poppy's conditions, click the link below:
Low Phospholipid-Associated Cholestasis (LPAC)
A rare genetic liver disorder that impairs the liver's ability to secrete bile due to a deficiency in phospholipids. This condition can cause bile flow problems (cholestasis), leading to severe symptoms such as nausea, vomiting, itching, and intense pain in the abdomen. It can also lead to the formation of gallstones.
Functional Neurological Disorder (FND)
Fibromyalgia
"I think, for me the hardest thing I had to come to terms with which was also my biggest challenge mentally was losing my job due to my health. I worked so hard from 12 to get where I was and it was my life."
For Poppy, the most difficult challenge in her health journey has been the emotional toll of losing her job—a career she had devoted herself to since she was 12 years old. "I worked so hard from the age of 12 to get where I was, and it was my life," she reflects. The loss of her career has left an unfillable void, one that has only deepened over time. Despite well-meaning reassurances from others that it would get easier, Poppy confesses, "I have just become more and more lost." The sense of purpose and identity that her work provided has been stripped away, leaving her adrift in a world that feels increasingly foreign.
The spontaneity that once defined Poppy's life is now gone, replaced by a rigid routine dictated by her health. She mourns the things she misses out on with friends because she's too ill to participate. She describes her former self as a woman who took life by the horns, charging forward at 100 mph, grabbing every opportunity that came her way. She made her own money, enjoyed it, and took pride in her accomplishments. The loss of her career, the impact on her relationships, and the limitations imposed by her health all contribute to a sense of being lost.
Poppy finds strength in her family - her partner and son.
Yet, amid the darkness, Poppy acknowledges that her journey has also brought unexpected blessings. Through her struggles, she has found an entire new family on social media, where she has connected with amazing new friends who offer support and understanding. Her online presence has become a source of comfort and community, giving her a platform to share her experiences and find solace in the shared stories of others. This connection to others and a newfound ability to appreciate the smaller things in life have given her a deeper understanding of her body and its limits. Through her journey, Poppy has become an advocate for herself and others facing similar challenges. Her Instagram page is a testament to her resilience, where she openly shares her experiences and connects with others who understand the complexities of living with chronic illness.
"One of my biggest achievements is still managing to give my son the life I had when I was growing up. I hope when he grows up he never feels as if he missed out because of me."
Poppy also finds light in the love of her family. Her son, in particular, has been a beacon of hope and motivation. She says one of her greatest achievements is being able to give him a childhood that mirrors her own, "I hope when he grows up, he never feels as if he missed out because of me". Poppy's determination to ensure her son experiences the joys of life despite her health struggles is a testament to her resilience.
Furthermore, Poppy highlights how her partner has been her steadfast rock through the ups and downs of her health journey. In the face of her illnesses, her partner has stood by her unflinchingly, offering love, support, and stability when the world felt overwhelming.
She draws strength from the small victories, finding solace in spa days and the restorative power of sleep. "Apart from spa days, I find nothing better than sleeping!" she jokes, revealing a side of her that embraces life's simple pleasures.
Ultimately, Poppy's story is one of quiet strength—a reminder that even in the face of overwhelming adversity, there is a courage that endures. She may be an "absent friend" at times, as she puts it, but those who know her understand that she is always there when it truly matters. And that, in itself, is a testament to the incredible person she is.
"I'd honestly tell my younger self to go harder in every single way I could - drink more, walk more, spend more time with family and friends. I'd tell myself to take more holidays, see the world and just generally enjoy life as much as I possibly could."
Looking back, Poppy wishes she could offer some advice to her younger self. "I'd tell myself to go harder in every single way I could," she reflects. "Drink more, walk more, spend more time with family and friends. Take more holidays, see the world, and enjoy life as much as possible." Her message is one of urgency and appreciation—a reminder that life, in all its unpredictability, is meant to be lived fully.
"Back then, I felt like I done so much, but if I'd have known what I know now then I really would try to cram in even more in than I already did!"
Today, Poppy's journey is far from over. While her health remains a challenge, her spirit is unwavering. She continues to advocate for herself and others, sharing her story to inspire and connect with those who face similar battles. Poppy's life is a powerful example of resilience, love, and the unbreakable human spirit. Despite the hurdles, she remains steadfast in pursuing a life filled with joy, however fleeting, which is an achievement worth celebrating.
Thank you Gabby for sharing your inspiring story for the 'A Note of Hope' project.
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