During one of the most challenging periods of my life, I found myself navigating the complexities of the healthcare system with an unexplained pain that baffled both me and my doctors. It was an experience that tested my resolve and reintroduced me to the critical importance of self-advocacy.
Self-advocacy, in this context, refers to taking an active role in managing one’s healthcare—speaking up, making informed decisions, and ensuring that one’s voice is heard and valued in medical settings. It is about pushing through discomfort to ensure your needs are met. Self-advocacy became a daily practice, not just a concept I’d heard about.
Pushing for necessary tests like a Nerve Conduction Velocity (NCV) and an MRI was not straightforward—I had to argue with doctors, battle insurance representatives, and meticulously gather my medical records to build my case. This experience reintroduced me to the vital importance of self-advocacy, a skill essential for securing the care I needed.
The NCV test was far from pleasant. The electrical impulses sent through my nerves felt like a series of sharp, jarring shocks. The intensity varied depending on the test’s location, but it was distinctly uncomfortable. The pain was brief but unsettling—a sharp reminder of my nerve dysfunction. Although the test caused some discomfort, I understood its importance in identifying the underlying health issues that had been troubling me. This test was a necessary step in gaining a clearer understanding of my condition, and it would play a crucial role in shaping the next phase of my treatment plan.
Being a patient often requires more than just showing up for appointments. It is about being informed, prepared, and proactive. As Epstein and Street (2011) emphasize, building a strong rapport with healthcare providers can make all the difference. My experience highlights the importance of persistence in seeking care—a recurring theme in my life, which I’ve shared before on Wiley’s Walk.
Facing medical challenges revealed how uncertainty can propel us toward self-advocacy and empowerment. While the ambiguity of diagnoses and treatment outcomes can be daunting, it also provides an opportunity to become more informed and take an active role in managing our healthcare.
The Power of Partnership: My Journey with Dr. A.
A crucial aspect of my self-advocacy was finding healthcare providers who truly listened—like Dr. A., my physiatrist. A physiatrist is a medical doctor who specializes in diagnosing and treating conditions affecting the musculoskeletal (bone and muscle) and nervous systems. Unlike other specialists who focus on specific organs or systems, physiatrists take a holistic approach, considering the entire body and how a condition impacts daily life.
From our first meeting, it was clear that Dr. A. stood out from other healthcare providers. There was no awkward “getting to know you” phase; she immediately engaged with my case. She was eager to collaborate with my other specialists and me, showing a genuine commitment to managing my condition. What set our relationship apart was her willingness to listen and involve me in the process. Dr. A. valued my input and made sure I was part of every decision. This wasn’t just a doctor-patient relationship; it was a true partnership.
Our collaboration extended beyond traditional medical consultations. We even used video footage of my exercises as a diagnostic tool, allowing Dr. A. to tailor my treatments more effectively. As Emanuel and Emanuel (1992) highlighted, when healthcare providers and patients work together in a respectful, open partnership, it empowers patients and results in more personalized and effective care plans—a truth clearly reflected in my own experience.
The Importance of Community: Support in Times of Need
Amid the challenges I’ve encountered in managing my healthcare, one thing has remained clear—the importance of community. As I focused on my health, the support from those around me was essential.
In my earlier post, “The People Factor,” I discussed how having a strong network can significantly impact our ability to overcome difficulties (Wiley, 2018). Whether it’s friends, family, or healthcare providers, having a community that understands and supports you can offer both emotional and practical help. My community was incredibly helpful as I navigated these obstacles.
Redefining Success: A New Vision of Possibility
A significant moment came when I had to confront the possibility that I might never achieve my goal of walking without assistive devices. This realization led to a period of deep self-reflection. It wasn’t just about accepting physical limitations but also about navigating the emotional process of adaptation and acceptance. I had to redefine what success meant for me.
Resilience, I have come to understand, is not merely about bouncing back but about discovering new paths to move forward. I began to see my walking devices not as limitations, but as valuable tools that enhanced my mobility and well-being.
This shift in perspective, which Masten (2014) identifies as essential for overcoming adversity, allowed me to become more adaptable and open to new possibilities. Redefining success after setbacks taught me that while life’s uncertainties can be challenging, they also present opportunities for growth and new beginnings.
Conclusion
Through self-advocacy, I discovered the true impact of my voice in guiding my care. Partnering with Dr. A. revealed the crucial role of collaboration in healthcare. With my community’s unwavering support, I found the strength to redefine success on my terms.
These experiences showed me that while we can’t always control our circumstances, we can choose how we respond. True success isn’t about returning to the life we once had—it’s about embracing a new reality with strength and optimism.
References
- Emanuel, E. J., & Emanuel, L. L. (1992). Four models of the physician-patient relationship. JAMA, 267(16), 2221-2226. https://doi.org/10.1001/jama.1992.03480160079038
- Epstein, R. M., & Street, R. L. (2011). Patient-centered communication in cancer care: Promoting healing and reducing suffering. National Cancer Institute. https://doi.org/10.1037/e603972010-001
- Masten, A. S. (2014). Ordinary magic: Resilience in development. Guilford Press.
- Wiley, K. A. (2018, March 30). The people factor. Wiley’s Walk. https://wileyswalk.com/2018/03/30/the-people-factor/
- Wiley, K. A. (2019, June 7). Adversity and resilience. Wiley’s Walk. https://wileyswalk.com/2019/06/07/adversity-and-resilience/
- Wiley, K. A. (2020, August 27). The physician as a partner: Beyond rapport to true collaboration. Wiley’s Walk. https://wileyswalk.com/2020/08/27/the-physician-as-a-partner-beyond-rapport-to-true-collaboration/
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