PRETTY LADY CHRONICLES: Be Your Own Best Advocate (Part 1)
BYOBA, or Be Your Own Best Advocate! That’s another mantra I take to heart (no pun intended). While managing the process of being a patient, I became focused on protecting my own best interest. Using my voice to advocate for myself gave me a new strength and empowered me.
After my initial diagnosis I lost a piece of myself. Always headstrong, independent, and a provider. I never feared speaking up for myself or others, but heart failure was a new journey. I didn’t know the do’s and don'ts, and I didn’t want to rock the boat. For the most part I just did what was asked and expected of me. Regaining my voice and independence would become vital to my survival.
There isn’t an instruction manual on being your own best advocate. Just like learning the process of being a patient, this is something I have learned over the years. From journaling questions to ask at appointments, researching and understanding treatment plans, to building relationships with healthcare providers. There are multiple ways to BYOBA!
The first seems self-explanatory, but that isn't always the case. On many occasions I think of questions to ask, but forget to write them down. As a solution, when a thought or question pops in my head I pull out my phone and text it to myself. Later, I add these questions to my journal. What happens when I leave my journal at home? As a backup, I take pictures of my journal entries or questions, and text them to myself as well as a family member or friend. This way I have access to them.
Tools for advocacy
I’ve been scared of treatment options at times. For example, when I was told I needed an implantable defibrillator. I wanted to know more about what to expect. What I learned instead was that the internet is not always my friend (lol).
Seeking additional knowledge and understanding was one thing, but over-researching led to even more anxiety. From those experiences, I began to set limits on the sources I used for research and added any concerns to my journal. I feel like anytime I can reduce anxiety and protect my peace I’m also being my own best advocate. Below are some of the tools I use to advocate for myself.
Tips to BYOBA
- Create a Journal - this can be a folder, but I find a binder to be best.
- Use Dividers - to separate sections by Questions, Treatment Plans, and Logs (i.e. for weight, BP, meds, notes).
- Build relationships with healthcare providers (i.e. Nurses, Doctors, Physician’s Assistants, Lab Technicians, Pharmacists…).
- Communicate, Communicate, Communicate = Advocate! 😊
Building relationships with my medical team and other healthcare providers benefits us all. Having a medical team that demonstrates they have genuine care and concern for me as a person is a must. It also adds strength and power to how I advocate for myself.
Balancing the process of being a patient is ongoing and multiple circumstances or obstacles can affect it. From the effects of medications to my medical diagnosis itself, there can be many ups and downs. I typically share my heaviest challenges with my therapist, but at times it has been necessary to share private or personal details with other members of my team. This isn’t always easy, and requires a level of mutual respect and trust.
The bonds I’ve built don’t end with my advanced heart failure team. I’ve built connections from pharmacists to lab techs. I can honestly say they each play a part above and beyond what’s routinely expected. Just two months ago while getting labs drawn, the phlebotomist observed discoloration in my skin. After a brief conversation she was adamant that I follow up with my team; and I did. Knowing that my medical team, and other providers have my best interest at hand matters! Just as important is how I reciprocate my appreciation to them. Maintaining these positive relationships are impactful, and another tool in being my own best advocate.
Strength, power, and independence
I have created a voice for myself by taking charge when it comes to my care. From journaling to building positive relationships with my medical team I continue to regain my independence by being equipped with these tools. They have given me the strength and power to be my own best advocate.
What are some ways that you can BYOBA?
Do you know someone living with kidney cancer?