Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am thrilled to share Sophie’s story as part of the ‘A Note of Hope’ project. Sophie discovered our initiative on TikTok and reached out to share her journey with chronic illness. Diagnosed with Hypermobility Spectrum Disorder (HSD), Fibromyalgia, and under suspicion of Hypermobile Ehlers-Danlos Syndrome (hEDS), Sophie’s path is a testament to her remarkable courage. As she navigates the demanding landscape of her first year as a PhD in English Literature, her dedication to her academic goals remains steadfast despite significant health challenges.
Sophie’s story transcends academic achievement; it celebrates her resilience and accomplishments despite chronic illness. It highlights the power of determination, the importance of support, and the need for adaptation to overcome even the most daunting obstacles. Her journey is a beacon of hope, demonstrating that perseverance makes it possible to achieve our dreams and find joy along the way.
I hope that sharing Sophie’s story through ‘A Note of Hope’ will inspire others facing similar challenges. Her experiences remind us all that, no matter the hurdles, there is always a path to our dreams and a reason to find joy in the journey." - Ellie Howe, creator and author of 'A Note of Hope.'
"My name is Sophie, I’m 23 and I’m in the first year of my PhD in English Literature. My health first got significantly worse when I was 18, although I’ve always struggled with fatigue, pain and joint dislocations - although I didn’t know that’s what these were at the time!"
At twenty-three years old, Sophie is navigating the rigorous demands of her first year as a PhD student in English Literature. Despite the challenges that often come when following this path, her dedication and passion for her research fuel her perseverance and commitment to her academic journey. However, her path to academic achievement has been anything but straightforward.
Diagnosed with Hypermobility Spectrum Disorder (HSD), Fibromyalgia and suspected of having Hypermobile Ehlers-Danlos Syndrome (hEDS), Sophie’s journey has been marked by resilience in the face of significant health challenges.
Fibromyalgia is a chronic disorder characterised by widespread musculoskeletal pain, fatigue, and tenderness. It affects the body's ability to process pain signals, amplifying the sensations felt by the sufferer. For Sophie, this means living with constant pain and fatigue, significantly impacting her daily life and academic pursuits. The primary symptom of fibromyalgia is widespread pain that persists for at least three months, often accompanied by fatigue, cognitive difficulties, and sleep disturbances.
While fibromyalgia itself presents numerous challenges, Sophie also contends with hypermobility—a condition where joints can move beyond the normal range of motion, often leading to joint pain and instability. While some people with hypermobility may not experience significant issues, others develop symptoms that can severely impact their quality of life. This is where Hypermobility Spectrum Disorder (HSD) comes into play, encompassing a range of conditions characterised by joint hypermobility and related symptoms like chronic pain, dislocations, and fatigue.
HSD can present a variety of challenges, including frequent joint dislocations or subluxations (partial dislocations), chronic pain, and fatigue. Individuals with hypermobility often find their condition affects daily activities and physical functions, requiring careful management and adaptation.
Sophie’s health began to deteriorate significantly when she was 18, although she had long experienced these unexplained symptoms of fatigue, pain, and joint dislocations. "I’ve always struggled with these symptoms, but I didn’t know what they were at the time," she explains. Recently, her medical journey has taken a more specific turn with the suspicion of Hypermobile Ehlers-Danlos Syndrome (hEDS), a more defined and severe form of hypermobility.
Hypermobile Ehlers-Danlos Syndrome is a genetic connective tissue disorder characterised by extreme joint hypermobility, skin that can be overly stretchy and fragile, and a higher propensity for dislocations and subluxations. Individuals with hEDS may also experience chronic, widespread pain, fatigue, and issues with internal organs due to the laxity of connective tissues. Unlike general hypermobility, hEDS is part of the larger Ehlers-Danlos Syndromes (EDS) family, which includes several other types of connective tissue disorders, each with its own specific set of symptoms and genetic markers. The suspicion of hEDS in Sophie’s case provides a potential explanation for the severity and breadth of her symptoms, which during her sixth form days began to threaten her academic aspirations. Missing about two months of school, her grades plummeted, and some teachers advised her to accept the reality that university might be out of reach.
To find out more about Sophie's conditions, click the link below:
Fibromyalgia
Hypermobility Spectrum Disorder (HSD)
Hypermobile Ehlers-Danlos Syndrome (hEDS)
"Whenever I have a bad day or a flare up I’m scared that maybe this isn’t just an anomaly and it might be the new normal."
To this day, the constant unknown has an impact on Sophie’s confidence for the future.
"Even though these aren’t technically degenerative conditions, given the trajectory my health has taken, my symptoms are most likely going to get worse throughout my life," she says.
This uncertainty turns every bad day or flare-up into a source of anxiety, wondering if it’s just an anomaly or the new normal. This fear is not unwarranted, as none of Sophie’s diagnoses currently have any cure and only limited treatment options. Living with these complex and often misunderstood conditions requires a multifaceted approach to managing the physical and emotional challenges they present. Education about the conditions, self-care strategies, and support from healthcare providers, family, and friends are essential. Additionally, maintaining a positive and hopeful outlook is crucial for continuing to push forward.
"I really love reading and I’ve found a lot of joy in using that as an escape. I started listening to audiobooks when I was in in the hospital when I was 18 to drown out all the noises, but I really got into them in the months before my diagnosis when I was 21 as they give me a way to do the thing I love most even when it’s too hard to hold up a book or concentrate on the page."
Due to her health challenges, Sophie has had to spend an extended amount of time in the hospital. During these times, she often turns to audiobooks as a form of solace. "I started listening to audiobooks to drown out all the noises," She explains. This practice became even more vital in the months leading up to her diagnosis of HSD and Fibromyalgia when she was twenty-one. Audiobooks allowed her to engage with her passion for literature, even when she couldn’t physically hold a book or concentrate on the pages. "It takes me away from just sitting with my symptoms for a bit," she says, highlighting the joy and escape that reading provides her.
"When I was in sixth form and became unwell as I missed about 2 months of school. I was advised by some of my teachers to accept the reality that I wasn’t going to get into university because my grades had dropped so drastically. Despite this I managed to get into my top university, from where I now have two degrees and am working on a third!"
Despite these immense challenges, Sophie’s determination and passion for learning propelled her forward. She managed to secure a place at her top university, defying the doubts and low expectations placed upon her during her sixth form. Her acceptance into university was not just a milestone; it was a powerful testament to her resilience and unwavering commitment to her education.
Throughout her university journey, Sophie’s health continued to pose significant obstacles. Yet, she persevered, and her hard work paid off as she completed her undergraduate degree with flying colours. "The amount of hard work I had to put in during those months was difficult given my health and would not have been sustainable for any longer, but I found a way to work around my new symptoms and make sure it got done," she says. Sophie then went on to pursue a master’s degree—an impressive feat in itself, made even more remarkable by the extra challenges she faced—further deepening her knowledge and expertise in English Literature while earning her second degree.
Now, as a first-year PhD student, Sophie is working towards her third degree, delving into research that she is passionate about. Her journey through chronic illness while pursuing her academic dreams offers a powerful message of hope and perseverance, demonstrating that even in the face of significant challenges, it is possible to achieve your goals and find joy along the way.
"I would like to tell my 18-year-old self that she will eventually find a doctor who believes her, and this will give her a diagnosis and medication that will help. I also wish I could tell 21 year old me to dive into the disabled community online sooner - things got so much easier for me once I started to seek out others with similar stories and accept my disabilities a bit more."
Reflecting on her journey, Sophie wishes she could reassure her 18-year-old self. "I would like to tell 18-year-old me that she will eventually find a doctor who believes her, and this will give her a diagnosis and medication that will help," she says.
She also wishes she could advise her younger self to dive into the disabled community online sooner. "Things got so much easier for me once I started to seek out others with similar stories and accept my disabilities a bit more," she explains. Connecting with individuals who understood her experiences made a substantial difference. She found practical advice on managing symptoms, emotional support during tough times, and a sense of belonging that she hadn't experienced before. The shared experiences and encouragement from this community not only helped Sophie cope better with her conditions but also empowered her to advocate for herself more effectively in medical and academic settings. Her experience with the online chronic illness community and its profound influence on her journey is one of the key reasons she was passionate about sharing her story with A Note of Hope.
Sophie's story is more than just one of academic success; it is a celebration of her achievements in the face of chronic illness. Showing that with determination, support, and adaptation, it is possible to overcome even the most daunting challenges and create a fulfilling, successful life for yourself.
Thank you Sophie for sharing your inspiring story for the 'A Note of Hope' project.
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