Patient Advocacy 101: A Beginner’s Guide to Finding Your Voice, Building Your Team, and Navigating Care with Confidence
- Feb 13
- 6 min read
Patient advocacy 101 for beginners: understand what advocacy really means, how to prepare for appointments, communicate with providers, evaluate options, and stay grounded in your own values and goals.
Why this guide exists
Most of us were never taught how to be patients.
We were taught to be polite.
To trust the expert.
To not take up too much time.
To assume there’s one “right” answer.
Then something happens—a diagnosis, chronic symptoms, a confusing test result—and suddenly you’re expected to navigate insurance portals, specialists, side effects, second opinions, and treatment decisions that feel way above your pay grade.
Patient advocacy is the missing life skill between “I don’t understand what’s happening” and “I feel like a partner in my own care.”
This guide exists to help you:
Ask clearer questions without feeling awkward
Prepare for appointments so you don’t freeze
Evaluate options without panic-googling at 2 a.m.
Build a team that actually feels like a team
You don’t need to become a medical expert. You just need a better operating system.
What is patient advocacy?
Patient advocacy is the ability to represent your own needs, values, and goals inside the healthcare system—so care happens with you, not just to you.
It includes:
Understanding your options (not just the first one offered)
Communicating symptoms in ways providers can use
Asking for clarification without apologizing
Bringing in support people when you need them
Saying “I need more time” or “I’d like another opinion”
What it is not:
Being confrontational
Rejecting all conventional care
Becoming your own doctor
Having to do everything alone
Big idea: Advocacy is not about fighting the system—it’s about participating in your care as the main character, not a bystander.
Patient Advocacy 101: How it works (in normal human language)
Advocacy rests on three pillars:
Preparation: knowing what you want to understand
Communication: translating your experience into useful info
Permission: remembering you’re allowed to ask, pause, and choose
Healthcare visits are short. Stress is high. Memory gets fuzzy.
Advocacy is simply the structure that protects you in that reality. Think of it like traveling to a country where you don’t speak the language fluently.
You don’t need to be a native speaker—you just need:
A few key phrases
A map
The confidence to ask someone to repeat themselves
The advocacy lens: patterns over panic
Most people arrive at appointments with either:
A giant emotional story
A list of random symptoms
Or total shutdown
Advocacy helps you translate your experience into patterns providers can actually work with:
When did this start?
What makes it better or worse?
What have you already tried?
What matters most to you right now?
It’s not about being perfect. It’s about giving your body a clearer voice.
What to expect (experience-based)
When you begin practicing advocacy, a few things usually happen:
Appointments feel slightly less rushed
You remember more of what was said
Providers respond differently to prepared questions
You start noticing which clinicians welcome partnership—and which don’t
You may also feel:
Uncomfortable the first few times
Afraid of being labeled “difficult”
Emotional when talking about your experience
All of that is normal. Advocacy is a skill, not a personality type.
Myths + misconceptions
Myth 1: Good patients don’t question doctors.
Reality: Good care depends on good information—and you are the primary source.
Myth 2: Advocacy means arguing.
Reality: Most advocacy sounds like: “Can you help me understand…?” “What are the alternatives?” “Is there time to think this over?”
Myth 3: If a treatment is recommended, it must be the only option.
Reality: Many decisions involve trade-offs, preferences, and multiple paths.
Myth 4: You have to do this alone.
Reality: Advocates can be friends, partners, nurses, social workers, or patient navigators.
How often/how much/how long
Advocacy isn’t a one-time event—it’s a rhythm:
Before visits: 10–15 minutes of prep
During visits: 2–3 key questions
After visits: a quick recap to yourself
Consistency beats perfection. Even small steps change outcomes.
Best practices (before/during/after)
Before an appointment
Write your top 3 goals for the visit
Bring a medication + supplement list
Track symptoms for 1 week if possible
Decide who you want with you
During the visit
Start with: “Here’s what I’m hoping to address today…”
Ask: “What are the options and trade-offs?”
Take notes or record (with permission)
Repeat back what you heard
After the visit
Summarize next steps in your own words
Schedule follow-ups before you leave
Notice how you felt with that provider
How to choose support and a care team
Good-fit providers usually:
Welcome questions
Explain reasoning
Discuss risks and alternatives
Respect your pace
Treat you as a collaborator
Green flags:
“Let’s decide together.”
“Here are a few ways we could approach this.”
“Tell me what matters most to you.”
Red flags:
Dismissing symptoms
Rushing decisions
Shaming language
“This is the only way.”
Remember: You're allowed to build a team that feels safe in your nervous system.
FAQs
What if I freeze and forget everything? Bring notes. It’s not cheating—it’s strategy.
Can I ask for time to decide? Almost always, yes.
What if my provider gets annoyed? Their discomfort is not proof you’re wrong.
Do I need medical knowledge to advocate? No—you need curiosity and clarity about your goals.
Simple “Getting Started” Checklist
Write one paragraph of your health story in plain language.
Make a one-page meds + supplements list.
Prepare three questions before every visit.
Practice one phrase:
“Can you help me understand that?”
Bring a support person to the next appointment.
Start a “care notebook” for test results and notes.
The Bottom Line
Patient advocacy is not about becoming louder—it’s about becoming clearer.
Clearer about:
What you’re experiencing
What you need
What matters to you
What choices are on the table
You don’t need to be perfect. You just need to stay in the conversation.
Listen to the full episode with patient advocate Deb Krier
Want to go deeper?
In this episode, you’ll learn:
Why patient advocacy can change the course of your care—and how to start using your voice
How to build the right care team (and when it’s time to seek second opinions)
What Deb’s experience taught her about asking questions, making decisions, and trusting yourself
How humor, mindset, and self-trust can help you navigate even the most overwhelming diagnoses
Best for: anyone navigating a diagnosis, supporting a loved one through treatment, or wanting to feel more confident and empowered inside the healthcare system.
Learn more about Deb Krier
Deb Krier, MBA, MS, is a communications expert, stage 4 cancer survivor, and the founder of TryingNotToDie.Live—a platform dedicated to helping patients advocate for themselves, ask better questions, and navigate the realities of serious illness with clarity and courage.
Her journey began with a routine mammogram in 2015 that quickly escalated into a life-threatening diagnosis and a series of catastrophic treatment complications.
Over 18 months, Deb endured extended hospitalizations and nine surgeries—experiences that taught her firsthand how critical it is for patients to use their voice, trust their instincts, and actively participate in their care.
As the founder of Wise Women Communications and host of The Business Power Hour, Deb has spent decades helping others communicate with confidence.
Today, she brings that same skillset to patient advocacy—empowering others to move from overwhelm to informed, self-led care. At the heart of her work is a simple mission: helping people live fully, advocate fiercely, and remember that their voice matters.
Connect with Deb:
🌐 tryingnottodie.live
🌐 wisewomencommunications.com
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Medical Disclaimer: This content is for educational purposes only and is not medical advice. It is not intended to diagnose, treat, cure, or prevent any condition. Always consult a qualified healthcare provider for questions about your health, medications, or treatment decisions.
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