A Nurse's Perspective Shaped by Illness: What Becoming the Zebra Revealed

Abstract

Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare, multisystemic connective tissue disorder characterized by generalized joint hypermobility and pain with presence of other comorbidities affecting various organ systems. This hEDS patient perspective evaluates the growing disconnect between providers and patients in a rural setting. From working as a nurse at the bedside to now becoming the patient herself, M.K. illustrates how clinical assumptions, burnout, and limited understanding can lead to misdiagnosis and patient harm. This piece emphasizes the need for humility, empathy, and individualized, patient-centered care to be upheld in clinical practice. Recommendations are made for strengthening humanistic practice through intentional listening, self-reflection, and collaborative, patient-centered decision-making.

Introduction

I was a nurse. I was a witness to the burnout and working through the trenches of an understaffed care team. Yet we marched forward to be there for our patients. Now, I am the patient. A year away from advancing my education to become a nurse practitioner when my health declined rapidly; now I am a patient combatting a rare disorder and living on Illinois Medicaid. I have hypermobile Ehlers-Danlos Syndrome (hEDS) and a laundry list of comorbidities as a result of this diagnosis. hEDS is the most common subtype of Ehlers-Danlos syndromes (EDS) which are classified as multisystemic connective tissue disorders.^1,2 Hallmark features of hEDS include generalized joint hypermobility, persistent joint pain, and soft velvety skin that cannot be explained by an alternative diagnosis or linked to a genetic marker.^2,3 hEDS affects everyone differently, and we are frequently identified as “zebras.” This is in reference to the rarity of our presentations and unique presentations between patients. hEDS is associated with a broad range of comorbidities affecting multiple organ systems. Most notably chronic pain and fatigue, autonomic dysfunction, mast cell activation syndrome (MCAS), and GI disorders affect more than half of patients with hEDS in recent studies.^1,4,5 Growing up and working in a predominately rural region, I assumed horses when I heard hoof steps. Now, here I am—the zebra.

It was not until my own health unraveled that I began to understand an entirely different truth. In a time when there is more medical knowledge and opportunity for connection than ever before, the relationships shared between providers and patients are growing increasingly strained. Before my diagnosis I never fully understood what I know now: there is a severe decline in compassionate care, leaving many patients dissatisfied and unheard. Individuality was once central in healthcare but now feels like a foreign concept. In a system that demands more while doing less, it is easier to treat the symptoms rather than the patient; especially in a rural setting that is already resource deprived. Even routine diagnoses and typical disease presentations face significant barriers in rural regions primarily due to lack of access to timely care. Given that I am now a zebra with a unique diagnosis that requires individualized, patient-centered care, the gaps that widen the disconnect between the provider and patient are blaringly apparent.

Personal Perspective

In an era where burnout is escalating and patient mistreatment is too often dismissed as a byproduct of an overburdened system, the consequences become painfully personal. During one of my many emergency department (ED) visits for complications related to hEDS, I was addressed by an ED physician who stood, and remained, in the doorway with his arms crossed. He stood there coldly and stiff, without moving to perform an examination. I was curled up in the bed, vomiting from a flare of gastroparesis and mast cell activation syndrome (MCAS). My white count that night was in the eighteen-thousands. I told him my throat was extremely sore, yet he made no effort to examine me. There in the doorway, he argued with me: “I know what's going on here.” Judgement rolled off of him. Because he saw that I use medical cannabis, he insisted my symptoms were due to cannabinoid hyperemesis syndrome. I was labeled a substance abuser; when in reality, medical cannabis allows me to avoid narcotics and manage my nausea. My diagnosis that night was summed up to be cannabinoid hyperemesis syndrome and anxiety; otherwise, the physician's assessment was, “within normal limits.” 

Eight hours later I found myself in a convenient care office first thing that next morning. My throat was killing me. The provider took the time to examine me and found large white patches throughout my throat and lymph node enlargement, characteristic for strep throat. She was stunned by the “assessment” I received in the emergency department the night before as she read over the physician's note, shaking her head. 

What I had experienced was a severe strep throat infection that resulted in an MCAS and gastroparesis flare which sent me to seek emergent help. I only seek care at the ED if I cannot gain control over these episodes; especially because each ED visit is a gamble for mistreatment. That particular visit was one of the worst I have experienced, and I felt more harm was done than good. Having also the perspective at the bedside of patient encounters, I understand how easy it is for implicit bias to shine through and dictate our actions. Given that my chart reveals frequent painful ED visits with cannabis listed in my social history, I face the stigma as a “drug-seeker” rather than a patient suffering from chronic illness who wants to be better understood. All I want is to be listened to and to be heard. I want providers to be open to discussion, appreciate my current state, and move with me to bridge the gap in understanding.

The root cause of harm in my experience stems from failure to change perspective, work together, and find a solution for the problem at hand. It may seem irrelevant, but I promise you that these small acts make all the difference between the provider and the patient. Though deemed to be small acts, they are a catalyst in resuming individualized, patient-centered care. This and humanism against the unknowns in medicine will save lives.

Practical Recommendations

The burnout providers face is real. The demands of modern medicine often restrain the human connection that was once central to clinical care. Even while major advancements have been made to improve disease treatment and care delivery, the healthcare field now appears to be driven by clinical productivity and performance. To meet administrative demands, visits have become shorter and meaningful interactions between the provider and patient have diminished.^6,7 I know firsthand how exhausting and emotionally heavy this field can be, and I recognize that many providers are doing their best within a strained system. As healthcare has become increasingly tainted by the industry, it is now more important than ever to re-establish the emotive domains of empathy, compassion, and connectedness.

Humility is a recurring theme among humanistic providers,^8,9 who consistently emphasize the privilege of caring for patients. Patients are often at their most vulnerable state upon presentation, yet they still extend their trust. Maintaining a humble attitude, one that reflects a willingness to learn from patients, fosters openness and mutual respect. I recall during my time at the bedside often being curious about my patients; and how, although symptom presentations may have similarities and overlap, each patient had their own story to share. It is important that we as providers take the time to listen. With that, upholding a mindset and standard of behavior based upon “treating others the way you would want to be treated.” Empathetic providers often attribute the principle of The Golden Rule as a guiding force that strengthens patient interactions and relationships.^8,9 Looking back to that specific visit to the ED, if only the physician would have approached my case in the way he would want himself or his loved ones to be treated, my experience likely would have elicited a much more optimal outcome. Furthermore, promoting a meaningful connection with patients in a clinical encounter drives a more humanistic practice. Zulman et al ⁷ identified several strategies that can strengthen provider presence and enhance the clinical experience for both patients and clinicians. These include preparing with intention, listening intently and completely, agreeing on what matters most, connecting with the patient's story, and exploring emotional cues. When practiced alongside humility and empathy, these approaches help ensure that humanism remains central to clinical care.

I look to my younger cousin as an example. Nearly 10 years my junior, she is just beginning her journey in the healthcare field. However, her approach to patient care gives me hope. Maybe she is not yet scarred by the corrupt system; but rather, I choose to believe otherwise. I have found it challenging at times to share my journey authentically with my loved ones. Although she is family, my cousin has a nature to her where she is easy to open up to, like indulging with an old friend. Her attitude toward people in general is reflected in her actions. As we share stories about our experiences in the healthcare system, it is evident that she has such a passion for people and the healthcare profession. She has gone above and beyond for me, not just because I am family, but for her patients as well. She speaks and listens to everyone like they matter, with the same sparkle in her eye that she has had since she was a kid. Furthermore, the presence of learners, and young professionals like my cousin, with their impressionable minds, serves as a powerful reminder to uphold humanistic standards of care. My cousin has shared her experience of good and bad mentors in the field, and I recall that bedside manner cannot be taught, but rather learned through our superiors and team leads. Many humanistic providers attribute teaching and role modeling to sustaining their humanism.^8–10 In shaping the next generation of providers, both positive and negative role models hold influence, underscoring the responsibility and impact of modeling compassionate, patient-centered behavior.

Conclusion

There is a striking juxtaposition in practicing medicine at a time when we are more connected than ever, yet provider–patient disconnection continues to grow. The practice of humanism in medicine can feel like a lost art. I never fully understood this until I became the patient myself. I do not believe my encounter with the ED physician was intended to be harmful, but the interaction illustrated how quickly assumptions and burnout can overshadow patient-centered care. Although hEDS is rare and often misunderstood, it deserves thoughtful consideration and informed dialogue. I want providers to remain open, curious, and willing to advocate alongside their patients. Humanistic, individualized care depends on humility, empathy, and a deep recognition of the privilege of caring for patients at their most vulnerable. By preparing with intention, listening fully, and connecting with patients’ stories, providers can strengthen presence and restore meaningful relationships in clinical encounters. Sustaining these habits requires ongoing self-reflection, mindfulness, and a commitment to modeling compassionate behavior. Changing the status quo in medicine is difficult, but not impossible. Together, these practices call on providers to intentionally preserve humanism at the center of medicine.