You Don’t Have to Do This Alone: The Power of Patient Advocacy
I knew when the doctor called and said I needed to come in immediately. I knew my life was about to change. I knew the news was not good. I knew I was quickly feeling overwhelmed with questions and anxiety.
The next day’s drive was the longest twenty-minute drive I have ever taken. My mind raced with prayers and questions. Yes, I had done a ton of research; it’s what I do. I knew she would confirm my fears, and while I knew I had a lot of information, I was still not ready.
A year later, I am pretty well adjusted to my diagnosis and have made the changes needed to live a healthy life. BIG changes were required, but I refused to let a diagnosis control my life. I knew that doing nothing would not be an option. I knew I needed support, and thankfully, I knew where to get it.
For most, anything dealing with our health can be intimidating, especially when we feel unprepared, unheard, or unsure. Luckily, I am well-versed, well-researched, and well-trained in health, as I am a health communication educator and a board-certified patient advocate. Thus, I spend every day reading and talking about health and the healthcare system.
But, as I said, I am one of the lucky few. For most, the overwhelming experience of having our health on the line is complicated further by limited appointment time, confusing medical terminology, or fear of being dismissed when we express concerns. As a result, patients commonly feel frustrated and misunderstood and sometimes fall into the gaps in the healthcare system.
For patients experiencing complex medical conditions, the frustration and confusion are even more significant. Layer on top of this any form of trauma, minority status, or lack of insurance, and soon it’s not just the physical body that is impacted but our mental health as well.
We All Need Support
Research has consistently shown that we have significantly better health outcomes when feel that we have support and a community. Knowing that we have people to talk to, to help us find information, and to be a point of comfort not only helps us find the courage to keep fighting but also has been found to increase our pain tolerance and shorten the time it takes to heal(1). The problem is many patients also experience barriers to care, including fear that they are a burden on families or friends or that they are taking up too much time or space during an appointment.
The truth, however, is your health matters, and it’s okay to ask for more time or follow up if needed. It is okay to ask for help!
We NEVER Need to be Alone
That is why I do the advocate work I do. Patient and health care advocates (sometimes called patient navigators) serve as allies, helping patients communicate effectively with providers, ask the right questions, and make informed decisions about their care. We offer support when you feel powerless, intimidated, or uncertain about how to proceed.
How, you might be wondering? For starters, I often spend much time clarifying medical jargon and processes. I translate what the providers tell my patients, I research to get more information, and I find ways to help it become understandable. Additionally, I help patients prepare for appointments and organize their concerns. Ensuring that their preferences and values are respected in their care plans. Given my extensive communication background, I also mediate conflicts or misunderstandings between patients and providers or family members. Lastly, I provide emotional support and encouragement during challenging moments. In short, as an advocate, I seek to empower patients to take an active role in their healthcare and ensure their needs and rights are prioritized.
Though a great deal of what we do as advocates involves communication and emotional support, many advocates also provide essential help in handling medical bills, insurance claims, and financial assistance programs. Those with clinical backgrounds guide patients in choosing treatments that align with their values and needs. This said, we all fight to ensure patients receive fair treatment and are not ignored, misdiagnosed, or mistreated.
All in all, an advocate can be invaluable if you’re facing a new diagnosis or a complex treatment plan or feel unsure about navigating the system.
One Place You Can Turn
Compassionate Navigation, LLC is one way to find help if you or your loved one require additional support. We offer personalized one-on-one in-person or virtual consultations.
Reference:
Sturgeon, J. A., & Zautra, A. J. (2016). Social pain and physical pain: shared paths to resilience. Pain management, 6(1), 63–74. https://doi.org/10.2217/pmt.15.56
