Funny how some rare diseases garner massive media attention while others languish in silence. We often focus on the differences among these diseases, noting the demographics of the patients afflicted or the most apparent, differentiating symptom. In reality, there’s more that binds diseases together than sets them apart.
Nineteenth century Parisian physician, Jean Martin Charcot said it best: “Disease is very old, and nothing about it has changed. It is we who change, as we learn to recognize what was formerly imperceptible.” This increasing cognizance, seeing what was previously unknown, connects all diseases to one another. Patients would describe it as the experience of living with the disease; the shame in presenting symptoms to a physician only to be disregarded; the humiliation in feeling a certain way only to be told those feelings aren’t real.
Shame and humiliation are fundamental to the human condition. Children feel it when they’re scolded. Adults feel it when they endure professional or personal setbacks. It’s never pleasant. But it’s one of the few things we all share.
It’s through this shared experience that patients of different rare, complex diseases must come together. When we adjust our perception of one disease, to better recognize the symptoms and its effects on patients, we should then extend that progression to other diseases of similar complexity.
Patients with Long COVID or post-COVID syndrome were initially dismissed or told their symptoms would quickly resolve when those symptoms first appeared during the pandemic. Months went by, but they still persisted. With it came the anguish of shame and humiliation, exacerbating an already unpredictable disease. Years later, we’re developing consensus models to understand common presenting symptoms and to derive diagnostic criteria. Finally, these patients have been heard.
This only happened because the patients afflicted advocated for their condition to be properly recognized – all while enduring its symptoms. They changed the perception of their disease and subsequently, now receive the care they deserve. As a sign of their success, we’re seeing research dollars pour into the study of Long COVID and post-COVID syndrome.
Other similarly amorphous, complex rare diseases are not so lucky. Take patients with chronic, intractable pain. Most suffer through years of misdiagnoses, one after another, while navigating the byzantine world of disability claims before they receive the care and support they need. Some don’t make it.
Patient suicide, once a taboo topic, is now more openly discussed. It’s one of the many perception shifts slowly materializing for chronic pain patients. But more progress is needed.
Chronic pain patients can achieve this by connecting with patient advocacy organizations that support other diseases. Start by identifying similarities in the conditions. There are quite a few. Reporter Ryan Prior, himself a patient struggling with Chronic Fatigue Syndrome, noted similarities in his condition with those who had Long COVID. Once he got diagnosed with COVID, he experienced the similarities firsthand.
Experience, more than anything else, matters most to patients. Chronic pain patients should be mindful of that when reaching out to other organizations. It’s the common bond that ties all diseases.
After all, if federal agencies like the CDC and NIH can invest research dollars into studying the early symptoms of traumatic brain injury in combat veterans, then they can also study the fluctuating symptoms of chronic pain. Both diseases affect patients in similar ways. Both begin with an initial disbelief of the patient, create lingering shame and humiliation, and progress through an array of missteps and misdiagnoses before landing on the actual diagnosis.
When patients with different rare diseases meet, they discuss their experiences, often starting with the most painful ones. That’s what really matters: a patient and his or her perception of disease. Regardless of how technologically advanced medicine gets, it will forever remain beholden to patient experiences. Until we improve upon those experiences, we’ll limit the quality of care we provide.
Fortunately, we know how to fix this. We just have to implement what we already know. As Dr. William Osler said, “Listen to the patient; he [or she] is telling you the diagnosis.”
