Jamie's Story
Missing the Obvious: The painful Path to an EDS Diagnosis
Meet Jamie
Jamie’s journey through the healthcare system reads like a medical odyssey, stretching across months that turned into years. It’s marked by an ever-growing collection of specialist referrals and inconclusive test results. What started as occasional joint pain and gastrointestinal discomfort gradually evolved into a complex web of symptoms affecting multiple body systems.
They experienced neurological issues that doctors struggled to explain, gastrointestinal problems that disrupted daily life, rheumatological symptoms that limited mobility, and a concerning history of anaphylaxis that added another layer of medical complexity to their case.
Jamie Searches For Answers
Despite an extensive battery of tests – MRIs, blood work, endoscopies, colonoscopies, and countless specialist examinations – doctors consistently delivered the same frustrating message: nothing was wrong. Each test came back normal. Judging by the look in their faces, Jamie’s doctors clearly expected different results. How could such a Fat person have a normal blood pressure? Why did every single diabetes tests come back negative? Thie reactions spoke volumes about their preconceptions and biases.
But for Jamie, the normal test results meant they were dismissed without any real answers or options for treatment. Their list of diagnoses followed a familiar pattern that many fat patients recognize: fibromyalgia for the unexplained pain, depression and anxiety to account for the physical symptoms, and IBS when gastrointestinal investigations yielded no clear answers.
These diagnoses often felt like convenient labels rather than genuine explanations, ways to categorize symptoms without truly understanding their root cause. Each specialist operated in isolation, focused narrowly on their area of expertise while missing the bigger picture that was emerging.
Jamie Loses Faith In The Medical System
As time went on, Jamie’s symptoms began significantly impacting their quality of life. Fatigue became a constant companion, making even simple daily tasks challenging. Various types of pain – joint pain, muscle pain, and abdominal discomfort – created a constant background of physical distress. They noticed a marked decline in their ability to perform activities they once took for granted, watching their world gradually shrink as their symptoms expanded.
The emotional toll of this medical journey was perhaps as devastating as the physical symptoms. Each dismissive comment from a healthcare provider, each surprised reaction to normal test results, and each suggestion that weight loss would solve their problems added to a growing burden of medical trauma. Jamie found themselves spending countless hours preparing for medical appointments, gathering courage to face another potential dismissal, another round of weight stigma, another suggestion that their symptoms were “all in their head.”
Some doctors implied that Jamie’s mental health was the primary issue, suggesting therapy while dismissing physical symptoms. Others focused exclusively on their weight, treating it as the root cause of all problems despite evidence to the contrary. The constant cycling between specialists – from rheumatologist to gastroenterologist, from neurologist to cardiologist – created a exhausting rhythm of hope and disappointment. Each new referral brought initial optimism that this might be the doctor who would finally piece together the puzzle, followed by the familiar disappointment of another dead end.
Jamie Develops Heart Palpitations
When Jamie began experiencing heart palpitations, the cycle started anew. More tests were ordered, more normal results were met with surprise, and more suggestions about weight loss and mental health were offered instead of answers.
The disconnect between their lived experience – the daily reality of managing multiple debilitating symptoms – and the medical system’s response created a profound sense of isolation and self-doubt. They began to question their own body’s signals, wondering if perhaps they were indeed imagining or exaggerating their symptoms, despite knowing deep down that something was genuinely wrong.
A different kind of care
What weight inclusive treatment looks like
A Better Way
Imagine a scenario where Jamie’s healthcare journey took a different path. They walk into Dr. Chen’s office, already bracing for the familiar weight discussion, but something is different. The waiting room chairs are sturdy and armless. The medical equipment – blood pressure cuffs, examination tables, gowns – comes in various sizes. Small differences, but they signal something important: this space was designed with all bodies in mind.
Dr. Chen greets Jamie and spends the first twenty minutes just listening. Not typing into a computer, not rushing to conclusions, but truly listening. They ask about Jamie’s childhood, their family history, their previous healthcare experiences. When Jamie mentions negative encounters with other doctors, Dr. Chen doesn’t become defensive or dismissive. Instead, they acknowledge the impact of these experiences: “That must have been incredibly frustrating and invalidating. Unfortunately, weight stigma in healthcare is real, and it often delays proper diagnosis and treatment.”
As Jamie describes their symptoms, Dr. Chen takes detailed notes, creating a visual timeline of how different symptoms appeared and evolved. They notice patterns that previous doctors missed, perhaps because they were too focused on individual symptoms rather than seeing the whole picture. When Jamie mentions their theories about what might be causing their symptoms, Dr. Chen doesn’t dismiss them. Instead, they say, “That’s interesting – can you tell me more about why you think that might be the case?”
The breakthrough comes when Dr. Chen starts connecting the dots. They explain how symptoms that seemed unrelated – the joint pain, the gastrointestinal issues, the heart palpitations – might actually be connected. They discuss how conditions like hypermobile Ehlers-Danlos Syndrome (hEDS) can affect multiple body systems, and how common it is for patients to spend years seeking a diagnosis while being told nothing is wrong.
But Dr. Chen doesn’t stop at just making connections. They become an advocate and coordinator for Jamie’s care. They consult with fellow specialists. When test results come back normal, they don’t express surprise or skepticism – they celebrate these results while continuing to search for answers.
Most importantly, Dr. Chen creates a safe space where Jamie feels heard and validated. They work together to develop management strategies that don’t center on weight loss. When Jamie needs accommodations at work, Dr. Chen provides a detailed supporting documentat without question. When they discuss lifestyle changes, it’s always in the context of managing symptoms and improving quality of life, never about changing body size.
Through this approach, Jamie begins to trust their own body again. They learn that their symptoms are real, valid, and deserving of proper medical attention. With Dr. Chen’s support, they build a healthcare team that works collaboratively rather than in silos. For the first time in years, Jamie feels seen as a whole person, not just a collection of mysterious symptoms or a number on a scale.
How the Medical System Failed Jamie
Jamie’s doctors failed them in several critical ways. Their rheumatologist didn’t even ask about symptoms of joint hypermobility because of their size, defaulting to a fibromyalgia diagnosis without proper investigation. When presented with symptoms that didn’t fit their preconceptions about fat bodies – like normal blood sugar and blood pressure – doctors expressed surprise rather than satisfaction, revealing their bias-driven expectations.
The specialists worked in isolation, each focused on their narrow area of expertise without considering the connections between symptoms. The gastroenterologist diagnosed IBS without exploring its potential connection to Jamie’s joint problems. The cardiologist dismissed heart palpitations as anxiety when they couldn’t immediately connect them to Jamie’s size. Each doctor added to a fragmented approach that missed the bigger picture of EDS.
Most damagingly, healthcare providers consistently used Jamie’s weight and mental health as convenient explanations for their symptoms. Despite Jamie’s long-term work with a therapist who didn’t believe mental health was the root cause, doctors repeatedly suggested their physical symptoms were manifestations of anxiety and depression. They prescribed weight loss as a universal solution, failing to investigate the actual cause of Jamie’s symptoms and delaying their eventual EDS diagnosis.
Weight Inclusive Care Looks Like...
- A Focus on Symptoms, Not Size: Treating symptoms and conditions based on their presentation, not based on assumptions about weight. Normal test results should not be met with skepticism.
- Treating the Person, Not the Metrics: When test results come back normal but symptoms persist, it’s a signal to investigate further – not to doubt the patient’s experience
- Validating Experiences: Acknowledging that fat patients often face delays in diagnosis due to weight stigma. Creating space for patients to share their experiences without judgment.
- Practical Support: Providing appropriate accommodations and support without making weight loss a prerequisite for treatment. This might include:
- Pain management strategies that don’t assume weight loss as a solution
- Physical therapy and exercise recommendations that are accessible and appropriate
- Mental health support that is weight inclusive and focuses on coping with chronic illness
- Medication dosing based on current needs, not contingent on weight changes
- Empowerment and Advocacy: Supporting patients in advocating for themselves within the healthcare system. Helping them to understand their conditions and their rights to appropriate care, regardless of their size.
Weight-inclusive healthcare for complex conditions like EDS requires a fundamental shift in approach. The key to successful, holistic, weight inclusive management is remembering that conditions like EDS don’t discriminate based on size, and neither should healthcare. Everybody deserves thorough evaluation, appropriate diagnosis, and comprehensive care irrespective of their body size.
Where To Next
Over the past few years, I’ve been advocating for weight-inclusive medical care, sharing evidence and experiences that demonstrate that there’s a better way to practice medicine. This passion has grown into a book I’m currently writing, where I dive deeper into these transformative approaches to patient care. Check out No Weigh for more information.
If you’re looking for medical care that treats you as a whole person, not just a number on the scale, I’d love to work with you. Book a consultation and experience the difference that weight-inclusive healthcare can make. I have a lot of experience working with people who have EDS and are struggling to get a diagnosis.
Are you feeling tired all the time? There are a number of reasons why this may be the case, which is why I created an on-demand masterclass that focuses on how to diagnose and manage fatigue in a weight inclusive care.