Beyond the Textbook: Embracing Uncertainty with Our Chronic Patients
As you step into the world of healthcare, you're preparing to meet people at some of the most vulnerable points in their lives. For patients with chronic illnesses, the trajectory of their lives has suddenly or permanently changed. They have chronic pain, diabetes, or autoimmune disorders, and their struggles extend beyond any physical symptoms. Physical symptoms that may even be invisible.
They wrestle with emotional, mental, and social impacts that textbooks rarely touch on. And they represent complicated conditions, many of which don’t have a known or simple identifying diagnostic. Physicians are trained to fix, so navigating patients with this history is uncomfortable, making referrals a common next step.
When I developed ME/CFS, I tapped into my veterinary clinical skills to track symptoms and treatment responses. But as I went from doctor to doctor, I also confronted the reality that my veterinary training hadn’t prepared me to deal with complex cases, like a four-legged patient who appears normal and yet whose owner says is acting unwell. My empathy grew for the physician trying to weed through my long file.
Now retired, I’m bringing my patient self forward to help the next wave of medical professionals be more prepared for patients like me. I want to bridge the gap between what the textbooks teach you and who you will see in your clinic upon graduation. Chronic patients are more complicated, but the partnership can be incredibly rich and rewarding, even if the disease is never “fixed”!
The Invisible Patient: Understanding Chronic Illness
To truly fill in the gaps in your education about chronic disease, we need to pull back the curtain to reveal the reality for chronic disease patients. Let’s take a closer look.
The Realities for Chronic Disease Patients
Life with chronic illness often feels like a solitary battle. Many people face misjudgments that minimize their experiences, like assumptions that they are just seeking attention or should be able to manage their conditions solely with medication.
The reality is much more complex. Studies show that individuals with chronic conditions often grapple with significant mental health challenges, including anxiety and depression, which can complicate their journeys.
As future healthcare providers, it’s important to understand these nuances. Embracing the humanity of our patients helps us build deeper connections. Making your patient feel understood creates an environment where they feel seen and supported, which is more critical for their well-being than you know.
The Gap in Medical Education
As of 2024, six in ten Americans have at least one chronic condition. Despite the increasing prevalence of chronic illnesses, there’s still a significant gap in medical education regarding their effective diagnosis and management. With these individuals, making the diagnosis may be the easy part.
The management is lifelong and full of uncertainty. Physicians need to develop skills to help them navigate the roller coaster most of these patients will be on for the rest of their lives. Establishing joint expectations will help both the patient and clinician feel satisfied with how the journey progresses. Unmet, unrealistic goals will challenge the mental health of both parties.
According to a comprehensive global review conducted by the Universidad de Santiago de Compostela in Spain, most medical schools around the world are still not teaching their students about chronicity, despite “the current situation in which chronic patients consume most healthcare resources.”
This undeniable gap in education sounds bleak, but in fact, it presents an incredible opportunity for you, as emerging healthcare leaders, to advocate for educational reforms that prioritize chronic illness care. Your voices can help shape a more inclusive curriculum that emphasizes compassion, empathy, and a deeper understanding of patient experiences.
Patient-Centered Healthcare: Putting People Before Protocols
8 Principles of a Patient-First Approach
Our duty in the healthcare system, first and foremost, is to the patient. Here are the 8 principles of patient-centered care, as outlined by the Picker Institute:
Respect for patients’ preferences and decisions
Physical and environmental support
Emotional support, empathy, and respect
Clear communication, information, and support for self-care
Involvement and support of family and carers
Continuity of care and smooth transitions
Effective treatment by trusted professionals
Fast access to reliable healthcare advice
Imagine this: a healthcare system where patients are at the heart of every decision. This is the essence of a patient-first approach. It’s all about recognizing and honoring each patient’s unique story, experiences, and preferences.
The human experience is often messy, challenging, and not straightforward. By fostering open communication and collaboration, and a willingness to withhold the desire to immediately diagnose, you’ll empower patients to take charge of their health journeys.
Research by the Association of American Medical Colleges (AAMC) is clear on the benefits of building this dynamic, empathetic connection with patients: “Improving communication and trust between clinicians and patients improves patient willingness to engage in prevention practices, adhere to medical advice, and follow prescribed treatment regimens.”
As you enter the medical field, remember that the connections you build with your chronic patients can inspire hope, healing, and transformative change.
Integrating Patient-Centered Care into Medical Education
This is why teaching physicians to lean into patient-centered, human-centered care is crucial. By embracing the patient’s story, lived experience, and community network, healthcare providers can offer meaningful support in these areas:
Listening deeply to patient stories to better understand the real challenges they face.
Engaging with the patient's support system, ensuring families and caregivers are part of the care team.
Offering sustainable lifestyle solutions—such as diet, exercise, and mental health support—rather than just medication-based treatment.
While this approach might be less straightforward than treating an acute illness, it provides healthcare professionals with an opportunity to diminish uncertainty and offer long-term, impactful care that makes a difference in the patient’s life.
Integrative Care Strategies: A Holistic Approach to Chronic Illness
Modern medicine is slowly coming to terms with the fact that there’s more to managing chronic illness than medication. Lifestyle changes, nutrition, mental health support—these are core pieces of the puzzle.
Lifestyle medicine is a growing field that focuses on prevention and healing through diet, exercise, and stress management. Think about it: what if, instead of just prescribing a pill, you worked with patients to make sustainable changes that empowered them to take control of their own health?
The Role of Nutrition
Take nutrition. We know that what we eat has a profound effect on our well-being, especially for those of us managing chronic conditions. For example, my diet is a critical part of my disease management. I eat roughly the same things every day because I know how these foods make me feel. I had to learn this on my own with no specific recommendation from my physician.
As a healthcare provider, collaborating with dietitians or offering nutrition counseling can give your patients the tools they need to feel more energetic, focused, and physically regulated. This is a simple, yet powerful way to make a lasting impact.
The research shows time and again that assisting your chronic patients in adopting healthy habits and behaviors, like more nutritious diet choices and improved sleep, can help prevent or control chronic diseases.
So don’t be afraid to think outside the box and integrate various disciplines like lifestyle or integrative medicine into your treatment style.
The Human Experience: The Power of Community & Support
In chronic illness care, managing the medical aspects is just one part of the equation. Patients also need emotional and social support to help them navigate the uncertainties and challenges of their condition. This is where integrative care goes beyond medication, incorporating the patient’s community and lived experience into their care plan.
The Beryl Institute emphasizes that healthcare should focus not just on the patient, but on the broader human experience, which is all about the deep connection between individuals and their social networks.
Chronic illness doesn’t just affect the individual; it impacts their families, friends, caregivers, and communities. As healthcare providers, understanding this broader context is the key to unlocking truly patient-centered care.
Why Community Matters in Chronic Care:
Emotional support: Families, friends, and caregivers often provide the emotional foundation that patients need to stay resilient.
Practical help: Support systems assist with daily routines, from meals to transportation, helping to ease the burden of managing a chronic illness.
Shared decision-making: Including the patient’s network in medical discussions ensures a holistic approach, where lifestyle and personal dynamics are considered alongside medical advice.
As Glenna Crooks, the Network Sage, advocates, chronic illness patients thrive when their community is involved. By bringing the patient's social network into the fold and involving family and caregivers in decision-making, we acknowledge the importance of emotional, social, and psychological well-being in the healing journey.
Shifting from “Fixing” to “Supporting”
Unlike acute illnesses that can often be treated and resolved, chronic conditions typically can't be “fixed” in a traditional sense. This introduces uncertainty, something many physicians aren’t prepared to navigate due to the focus on diagnosis and treatment in medical education.
There are a few challenges you may notice when working with chronic patients:
Ongoing management instead of resolution
Emotional and mental health considerations as part of the patient’s daily experience
Uncertainty about outcomes and progression of the disease
I’ve reflected on my own medical training and realized that my education focused primarily on “fixing” the issue. We need to shift the focus toward ongoing support and management.
Special Considerations: ME/CFS, Long COVID, and Chronic Pain
Conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID don’t just challenge the people living with them (like me), they test the limits of our healthcare system's understanding. By becoming a health advocate for those living with these often misunderstood conditions, you’re helping to shine a light on the complexities of chronic illness care.
ME/CFS: More Than Fatigue
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a commonly misunderstood condition, and people often overlook its profound impact on patients' lives.
As future healthcare providers, you can help advocate for greater awareness and diagnostic approaches to relapsing and remitting conditions like ME/CFS where you observe your patient over the course of a series of visits, rather than just one in-person visit when they are healthy enough to attend.
By amplifying the voices of those living with this condition and aligning your approach to symptom management with our unique patterns, you can make a huge difference in helping us manage our lives better.
The Long Haul of COVID
As we come out of the global COVID-19 pandemic, many people are left with long COVID, a lasting reminder of this destructive virus. Long COVID is characterized by persistent symptoms long after infection, like extreme fatigue, brain fog, and dizziness.
This condition and its lack of understanding, acknowledgment, and effective treatment in the medical industry is just another example of the gap in chronicity education and implementation.
Chronic Pain: A Silent Epidemic
Chronic pain is an invisible struggle that affects 60 million people globally. Because it doesn’t have a clear-cut cure, managing chronic pain requires a comprehensive, holistic approach that considers both physical and emotional aspects.
By adopting a biopsychosocial model of care, you can create treatment plans that address the multifaceted nature of chronic pain, ultimately leading to better outcomes. Your commitment to understanding this silent epidemic will create hope and healing for so many.
Redefining Medical Education: You Are the Future of Chronic Disease Care
As you prepare for your future in healthcare, I encourage you to think about the kind of clinician you want to be. What changes would you like to see in the way chronic illness is taught and treated?
Don’t be afraid to challenge the status quo and push for reforms in medical education that focus on patient-first care. Your voice, your passion, and your empathy can inspire a shift toward a healthcare model that treats people, not just diseases.
Finally, know this: your journey in healthcare has the potential to make a profound impact on so many lives.
If you want to continue engaging in meaningful discussions about chronic disease education with me, join in on my LinkedIn, Instagram, or right here on my blog every month. Looking forward to connecting with you.
