Patient or Partner? Becoming Your Own Best Health Advocate

Emily

I can't believe we're actually doing this! Our first episode of “Here, This Might Help" is really happening.

e090da73

Heck yah! It’s been a fun effort and we’re finally here!

Emily

Yeah I’m so excited! Excited we get to share all this stuff we've figured out with everyone instead of just the two of us diving deep into it.

e090da73

Absolutely! wooo!! Since our podcast is about helping others with things we’ve figured out in life, I love that we get to kick off with something we're both so passionate about. It feels like the perfect first episode topic, right? Okay, so let’s get into it. Mind if I kick us off with a personal story about medical advocacy?

Emily

Go for it!

e090da73

Cool, thanks. Alright so try to picture this - you were in an ATV accident and shattered your leg, but you’ve been seeing your doctor for the past year and a half and are at a follow up appointment to check on healing progress of the bones. It was a complicated injury with many follow up surgeries and procedures, but you finally feel like things are looking up. So, sitting there in the exam room, you’re fully expecting news that your leg is finally healing and you’ll be out of the wheelchair and walkers soon.

e090da73

So your surgeon comes in, pops your X-rays up on the screen, and begins sharing that…your leg still isn’t healing. She goes on to say that she’ll have to take muscles from your torso and put them over the fracture to increase blood flow to promote healing. She mentions you’ll probably need more skin grafts. And even with all this, it’s very unlikely to heal at this point. Your ears begin ringing, drowning out her words… …until she drops the bomb and says “It’s time to consider amputation.”

e090da73

At this point your mind goes blank, tears start streaming out with no expression, and the air begins to feel sparse. You hear yourself asking her questions, but at the same time you’re not even present. The only thing going through your mind is - "What!" "How!" - You know how hard you’ve fought to stay alive and keep your leg for the past 18 months — and it’s taken everything you’ve had financially, emotionally, physically, mentally, all of it. And at this point EVERY SINGLE instinct in your body is screaming that this isn't right. To the depths of your soul, you’re devastated and overwhelmed.

Emily

That’s crazy, Liz! I can’t imagine.

e090da73

Yeah, honestly, sometimes I can’t believe it either — but that was me four years ago. Once I got to my car, I made the decision to call my “first team” — a few of my best friends, my family, and my husband. I shared the news, and we collectively agreed that this was not okay, and I needed more options. That decision changed my entire life. And throughout this process I learned how to better advocate for myself in the healthcare system.

Emily

Wow, Liz — that’s incredibly intense and traumatic. I hope none of us ever have to face something that serious. And it really brings us to why we’re here today: talking about the difference between being just a patient of your doctor versus being a true partner WITH your doctor.

e090da73

Yeah for sure, that's why this is such an important topic. I know we’re both passionate about health and wellness, but we're not doctors or medical practitioners. What we are are people who've learned the hard way that being an informed and engaged patient isn't a nice to have, it's a requirement for those of us who want a higher quality of health throughout our lives.

Emily

I agree. So let’s get into it and talk through what happens when patients become partners instead of just participants in their healthcare. And for everyone listening — trust me, the difference is literally life-changing.

e090da73

Alright so Emily, before we dive into the depths on this topic, let’s tell people a little bit about us and why we wanted to start here.

Emily

Well, we're both in our early forties - that phase of life where our bodies are starting to change in ways that can be pretty subtle at first. And we've both had these experiences where we realized that if we didn't take control of our own health and healthcare, nobody else was going to do it for us.

e090da73

Exactly. I think what's crazy is that the healthcare system almost expects you to be passive at times. The standard is that you show up, the doctor tells you what's wrong, gives you a diagnosis or prescription, and sends you on your way. For some people that works, but for others like us - we need a deeper understanding.

Emily

Right, but that model is broken. Especially for women. We can be understudied, underdiagnosed, undertreated. And we don't have to accept that.

e090da73

Yep - and that's why we're here. We want to give y'all the tools and confidence to become your own best health advocate. Because here's the thing - and this might sound harsh, but it's true - no one cares about our health as much as we do. Not our doctors, spouses or S.O.'s, not our parents.

e090da73

That responsibility — and that power — belongs to you. And let's be honest about something else - sometimes we're our own worst enemy when it comes to using that power. We might minimize our symptoms, avoid 'bothering' the doctor, or accept a dismissive response instead of pushing back. The system has problems, absolutely, but we also have to own our part in speaking up and stepping into our power. That's what advocacy really is - using your voice because you're worth it.

Emily

Okay, so Liz, take us back to that exam room. What led up to that moment?

e090da73

So this whole thing started with what seemed like a pretty straightforward treatment when I shattered my leg and severed a main artery in an ATV accident. But I’d always been active and at the point of the accident I was probably the healthiest I’d ever been. And since the injury, I’d taken great care of myself with nutrition, following doctor's orders, and going the extra mile for healing protocols. So while the artery repair healed beautifully, the broken leg just wouldn't heal.

Emily

How long are we talking?

e090da73

A year and a half, Emily. A year and a half of full disability, procedures, of being told "just give it more time," of ongoing pain that was affecting every aspect of my life. And I'm thinking about my future - knowing I want to be a mom someday, I want to be able to crawl around on the floor with my kids with a functioning set of legs, I want to stay active and athletic, and be able to be ABLE.

Emily

And your doctors were saying what exactly?

e090da73

Well, here's where it gets really frustrating. My primary surgeon was dealing with personal issues and was out of office for critical parts of my care and even some surgeries. So I'm trying to heal from this major injury, and while her team of surgeons was there, the continuity of care or attention from her just wasn't showing up.

Emily

That's terrifying.

e090da73

It was. To be fair, the other surgeons were wonderful - they really did their absolute best. But this was the second time I was facing death, and so it seemed reasonable to expect continuity during those few weeks. And while I got through that part, after the months and months of doing all the “right” things -- nutrition, exercise, medication, mindfulness, prayer, treatments -- you name it -- I was left facing amputation. Just hearing an "unfortunately, we’ve done all we can and this is how it's going to be." But something inside me was like, “No. This is not fair and it doesn't make sense.” I mean, there were a lot of emotions flying around in that moment -- but that one was the loudest.

Emily

What was the turning point for you?

e090da73

Honestly? It was my husband. He looked at me that day and said, "This doesn't have to be acceptable if it's not what you want." He challenged me to challenge the recommendations that weren't aligning with my personal goals.

Emily

I love that. Sometimes you need someone else to give you permission to advocate for yourself.

e090da73

Exactly! So, we sought out second, third, fourth opinions. We each pinged our entire professional and personal networks to find the right doctors. But here's the kicker, after all of this I ended up meeting with a limb salvage surgeon at the same hospital. This surgeon was lauded and recommended by my own orthopedic surgeon, and he ended up telling me that the previous muscle flap surgery they did on me wasn't even necessary. Major fail!!

Emily

Wait, what? At the same hospital?

e090da73

Same hospital! There were a few experiences in this particular hospital system that made me curious. First, I learned that it was a teaching hospital, and second I learned that their success metrics were morbidities -- meaning, not necessarily quality of life. So I started paying strong attention to their recommended courses of action in hindsight and looking forward. Were they using me as a learning case? Was this about what was best for me, or what was convenient for them? Or, most likely, was it a balance of both, but not necessarily what I wanted?

Emily

That’s such an important point — it really speaks to the need to understand the intentions and dynamics at play in your care, and to make sure your voice is part of every decision.

e090da73

Right. But look, I understand the fear that keeps people from advocating. I was terrified of selecting another doctor misaligned with my goals. I was dealing with the stress of potentially having to move for better care. I'm in pain, I'm managing bills and scheduling and trying to become literate about limb salvage procedures - it's overwhelming. All while having to support myself financially and keep life and work going. I mean thank God for my mom, my close friends, and my family for getting me through - I can never be more grateful for their sacrifices, support, and advocacy throughout the journey.

Emily

The mental and financial load of managing your own healthcare is no joke.

e090da73

It's not. But here's what I learned - because I was willing to advocate, because I took the time to become literate about my condition, because I had the drive to achieve my best outcome, my leg was saved! After being disabled for almost 4 years, by the grace of God and aligned medical teams — I can walk today!! I am intermittently disabled, but not all the time, so it’s an incredible win. So that’s how the ability to advocate literally changed my entire life.

Emily

And that's such a powerful example of advocacy in a crisis situation. My story is a little different - it's more about long-term chronic condition management. But the principles are exactly the same.

e090da73

Let’s hear about it! Okay so I already know a little bit of background, but let’s talk through your thyroid journey.

Emily

So I was diagnosed with Hyperthyroidism in 2007 -- that's an autoimmune condition where your immune system attacks your thyroid gland. It’s fairly common in women - it’s reported that one in eight women will develop a thyroid disorder during their lifetime. And at first, I did exactly what most patients do. I took the prescription, followed the basic instructions, and hoped for the best.

e090da73

That makes sense. But that wasn't enough, right?

Emily

Not even close. Symptoms stabilized at first then got harder to manage. I started with hyperthyroidism - that's when your thyroid is overactive and I had insomnia and high heart rate. Then seven years later (actually the same year we worked together at Abercrombie), I went off the medication since my levels had stabilized, only to find out my condition had completely flipped to hypothyroidism. That's the opposite problem, where your thyroid is underactive and you feel exhausted and foggy. I quickly realized that managing an autoimmune condition was going to require me to become a student of my own health. So I made this crucial decision - I wasn't going to be a passive patient anymore.

e090da73

Well I’m certainly proud of you for staying dedicated to learning about your condition. Knowing it was when we were at A&F, I hope it wasn’t all the stress from making sure you looked Abercrombie perfect every day, or maybe it was inhaling that cologne (what was it called -- Fierce?) that they’d pump into the HVAC system! Ha, those were crazy days, but fun enough at the time.

e090da73

Okay all joking aside, swinging from hyper- to hypo-thyroidism is a crazy shift. So tell us about that, what did that look like practically?

Emily

I insisted on working with the best specialists I could find. But more importantly, I became my own health detective. I read every book I could find about thyroid and autoimmune conditions. I researched treatment options, learned to recognize subtle symptoms, and discovered how much diet and lifestyle could impact my condition.

e090da73

And this is when you started tracking everything, right?

Emily

Everything. Lab work, symptoms, energy levels, sleep patterns, how different treatments affected me. Over the years, this data became my roadmap to understanding my body and what worked specifically for me.

e090da73

Hm -- This is bringing up something really important about the current state of healthcare. Alright, so -- you want to talk about why this kind of self-advocacy is so critical at this point in our lives?

Emily

Absolutely. Today's healthcare system is largely reactive and fragmented. Most of us see multiple providers throughout our lives, but very few doctors have a comprehensive view of our entire health history.

e090da73

And don't even get me started on electronic medical records that don't talk to each other.

Emily

Right! You go from your primary care doctor to a specialist to maybe an urgent care center, and none of them can see the full picture. Meanwhile, clinicians are overwhelmed -- and time-constrained visits may limit personalized care.

e090da73

So in this environment, I’d say that health literacy and self-advocacy aren't just helpful - they're essential for navigating care, making informed decisions, and taking control of your long-term health.

Emily

And there's this shift happening - have you heard of Medicine 3.0?

e090da73

I think so. Peter Attia talks about this in his book "Outlive," right?

Emily

Exactly. It's this idea of moving away from reactive, one-size-fits-all medicine toward preventive, data-informed care that empowers individuals to take ownership of their long-term health.

e090da73

Instead of waiting until you're sick and then treating the illness.

Emily

Right. It's about identifying risk early, using advanced diagnostics, continuous monitoring, and individualized interventions tailored to your biology, your lifestyle, your goals.

e090da73

And this is especially important for women in our age group. We're in our early forties - our bodies are changing, sometimes under the radar. If we're not paying attention, if we don't understand our hormones or our metabolic health, we can miss early signs that really matter.

Emily

Being proactive now - before perimenopause hits, before chronic symptoms become chronic diagnoses - can completely change the trajectory of our health in our fifties, sixties, and beyond.

e090da73

Ok so, you were tracking all this data about your thyroid condition. Did you ever hit a wall with a healthcare provider?

Emily

Yes, I definitely did. So I was working with a primary care physician who seemed competent enough. But my TSH (thyroid stimulating hormone) levels started climbing higher than what I knew was optimal for me, and she refused to adjust my medication.

e090da73

What was her reasoning?

Emily

Her reasoning was that my levels were still "in-range" according to the standard lab reference ranges. Even though I had symptoms - fatigue, brain fog, excess hair loss - that I recognized as signs my thyroid medication needed adjustment.

e090da73

That's so frustrating. You're literally telling her what's happening in your body.

Emily

Right! She was practicing what I call cookbook medicine - following guidelines without considering the individual patient in front of her. Because my numbers fell within the broad "normal" range, she was unwilling to make changes.

e090da73

Ugh, I have been there done that with docs too. So what did you do?

Emily

I made the difficult decision to switch to a new primary care physician - one who would actually listen to me and work with me as a partner in my care.

e090da73

Well that was a courageous choice! So -- did that make a difference?

Emily

It was night and day. When we finally increased my medication dosage based on my symptoms and my optimal TSH levels - not just the "normal" range - my symptoms disappeared, and my TSH levels returned to what I knew worked for me (based on all of my historic tracking)

e090da73

Yay! I love that. It must have been so validating and literally good feeling.

Emily

It was deeply validating. It confirmed that I knew my body better than any doctor who saw me for fifteen minutes once a year. And it showed me that the best healthcare outcomes happen when patients and providers work together as partners.

e090da73

So let's talk about what self-advocacy actually means, because I think some people hear that term and they think it means being self-important, confrontational or difficult.

Emily

That's such a good point. Self-advocacy isn't about confrontation - it's about collaboration and informed decision-making. It's about taking an active role in your health decisions, communicating effectively with providers, and making sure your needs are met.

e090da73

And this is actually what informed the title of this episode -- instead of being a passive patient, I like to think of it as being a partner!

Emily

Exactly. You're bringing your expertise about your own body and your own experience to the table, and combining that with their medical expertise.

e090da73

And there are, like, so many different dynamics that affect how people approach this. Like, I think about generational differences - how in years past people may have been taught to defer to doctors versus more modern times where there's an expectation to be more involved, given the speed and volume of information we have available.

Emily

Or gender differences. There's research showing that women's pain is often taken less seriously, or that women are more likely to be told their symptoms are psychological.

e090da73

And then there are educational, psychological, cultural, and socioeconomic factors that influence how comfortable people feel advocating for themselves, or even how skilled they are at it.

Emily

Right. We want to acknowledge that not everyone has the same resources or feels empowered to push back. But we also want to give people tools to work within whatever constraints they're facing.

Emily

So...one thing that's exciting right now is that we as patients have more tools to be empowered than ever before.

e090da73

Right! So let’s talk about that, this stuff excites and intimidates me all at once sometimes.

Emily

Well, think about wearables - Oura rings, WHOOP straps, Apple Watches. These devices are giving us continuous data about our sleep, our heart rate variability, our activity levels, etc.

e090da73

Yeah! I love my Oura ring! It's taught me so much about how different behaviors and factors affect my sleep quality.

Emily

Same with my Whoop! And then there are health data consolidation platforms that bring together your health records and your wearable data in one place that's actually accessible to you as the patient. Things like Apple Health, Guava Health, OneRecord.

e090da73

And we can't not ask this question -- how about AI tools?

Emily

Oh, this is where it gets really interesting. There are new AI-assisted tools that serve as health coaches and others that help doctors transcribe medical notes. But even basic LLMs like ChatGPT and Claude can help you understand medical terminology, prepare questions for appointments, or research your conditions.

e090da73

That makes sense. Even for myself I've prompted ChatGPT to help me understand lab results before, like just sending a screenshot of it! It's like having a friend who can translate medical speak into normal language — with a set of caveats -- of course!

Emily

Exactly. And we should talk about the risks too, right?

e090da73

Absolutely. So one of the risks is financial because some of these paid tools can be costly. And, they can be intimidating if you haven't been tracking your health closely before. So we definitely encourage a try before you buy mentality, and evaluate the healthspan benefits vs. the financial impact. We're talking about overall value here -- not just the costs or benefits on their own. We also have to be extra careful about misinformation — meaning the old adage of "don’t trust everything you read on the internet" is as true now as it was in the 90s...except it applies to GPTs at this point!

Emily

The internet is full of conflicting advice, especially when it comes to health and hormones and biohacking. Building true health literacy means learning how to discern credible sources and filter out the noise.

e090da73

Def. It’s not just about consuming more information - it's about consuming better information. It makes me think of that saying -- "the ancient problem was scarcity - the modern problem is abundance." To me, this means using technology is about navigating the abundance of information too through refinement or clarity, not just getting more of it.

Emily

Agreed. Can I share something that really drives home why this patient education is so important right now?

e090da73

Nah, I think we’re done here.

e090da73

I'm totally kidding!! Of course, let’s talk about it.

Emily

So I talked about my Hypothyroidism, which is an autoimmune condition. Well, UCSF Endocrinology - which is the premier endocrine specialty clinic that treats autoimmune conditions in San Francisco - they no longer even accept thyroid patients.

e090da73

Wait what!? Why?

Emily

Because they're so overwhelmed with demand from even more complicated autoimmune conditions. These conditions are becoming increasingly prevalent, and the healthcare system simply cannot keep up with traditional models of care.

e090da73

Wow. So what does that mean for patients?

Emily

It means that patients must step up and become educated partners in their own healthcare. The old model of "doctor knows best, just follow orders" is no longer sustainable or effective. Today, I manage my condition primarily with my primary care physician rather than needing an endocrinologist, but I'm thoroughly in tune with my symptoms and can read and interpret my own lab work with confidence.

e090da73

And so in your case, you understood that "in-range" isn't necessarily optimal for you, but that it’s more so a starting point and reference point.

Emily

Right! And I can advocate for the care I need based on that understanding.

e090da73

Okay, so we've talked about why this matters and shared our stories. Let's get practical. If someone is listening to this and thinking, "I want to become a better advocate for myself, but I don't know where to start," what would you tell them?

Emily

Start simple and build the muscle over time. First, acknowledge that managing your health involves a significant mental and emotional load. It's hard, and that's okay.

e090da73

Yeah, and this is serious because trying to do it all at once is not the greatest recipe for success. So let’s walk through, what’s one concrete thing someone could do before their next doctor's appointment?

Emily

Make a list. Write down your symptoms, your questions, your concerns. Don't rely on remembering everything in the moment.

e090da73

Absolutely - and I think it’s also about keeping a personal health record. By doing simple things like tracking your medications, your allergies, your symptoms, nutrition, and medical history. The New York Times, actually, had this great prep guide about how to keep your own health information accessible for a crisis situation, which will be linked in the show notes. But in general, the article is a good starting point, for the bare minimum information to get in order.

Emily

Yeah, love that! We’ll post some good show notes about what we’re talking through. But technology-wise, I’d say to pick one no-cost or low-cost tool to start monitoring some basic health metrics. It could be as simple as using the Apple Health app if you have an iPhone, or something like Clue for tracking cycles and symptoms.

e090da73

Definitely. And learn to ask good, strong questions. This is huge, for everyone. Don't be afraid to seek second (or many) opinions when something doesn't feel right. One thing I always hold as a strong truth in life is that the quality of our answers is a reflection of the quality of our questions - so asking clear and thoughtful questions is a skill to practice and grow.

Emily

AI tools like ChatGPT can support you in multiple ways - whether it's organizing your symptoms chronologically before appointments, helping you understand what your lab values actually mean, or even role-playing how to push back if a doctor dismisses your concerns.

e090da73

But we also need to be very careful about misinformation, right? I know I said it earlier but it warrants repetition -- everything you read online is not accurate or relevant to your specific situation.

Emily

Absolutely — and keep in mind that your doctor is a partner so technology should never be a replacement for trained and experienced medical professionals. Building health literacy means learning how to discern credible sources, ask the right questions, and filter out noise - not just consume more information.

e090da73

Definitely. Okay so something just popped into my head, and it’s a bit of a topic shift…but I want to be honest about something throughout my journey…

e090da73

...there were definitely moments in my journey where I questioned whether all the effort was worth it.

Emily

Oh wow, that feels surprising to hear from you actually. Tell me about that.

e090da73

Well, when I was dealing with my leg situation...there were times when I wondered if I should just accept what the doctors were telling me and not fight their prognosis. I thought -- maybe I was being too demanding, too difficult, or unrealistic. That was a real temptation and it felt easy because it was the path of least resistance. But, ultimately, it would have allowed me to give responsibility for my health decisions to someone else.

Emily

I felt the same way when that PCP dismissed my concerns about my thyroid levels. Part of me wondered if I should just accept her judgment. After all, she was the one with the medical degree.

e090da73

Yeah I totally get that. The reality is that it can get emotionally exhausting to constantly have to keep everyone aligned to your own goals -- meaning, your goals, for the quality of health and life you want to live.

Emily

True. But here's what I learned - and this might be the most important thing we say today - your health is your responsibility. Healthcare providers are dealing with overwhelming patient loads, insurance constraints, and standardized protocols. They can't always provide the individualized attention that you need even though most of them probably want to.

e090da73

Yep! I think that’s what was tough for me — recognizing that these doctors were their own selves too. Going back to my experience -- like when my surgeon left town, I'd heard it was something like she was supporting her best friend who’d just lost her teenage kid. And while I understood why she would've made that decision from her point of view, it obviously wasn't in my personal best interest. So in hindsight I think the key thing here is that when you become educated about your health, when you track your data, when you learn to interpret your symptoms, you become an invaluable partner in your own care and can react faster and with better responses when -- inevitably - life situations arise for our fellow humans who are doctors or medical caretakers.

Emily

Yes! And this is the partnership. You are capable of spotting trends, recognizing patterns in your health or life, and also have the ability to catch problems before they become serious.

e090da73

Love it. And to be clear — this doesn't mean you don't need healthcare providers - it means you need to work with providers who respect your knowledge, experience, and are strongly aligned to the goals and outcomes you want to achieve.

Emily

So let's summarize the key things we want people to take away from this conversation.

e090da73

First, self-advocacy isn't about being difficult - it's about being an informed partner in your healthcare.

Emily

Second -- technology and data can be incredibly empowering tools, but you need to use them wisely.

e090da73

Third, start simple. Pick one or two things you can do to become more engaged with your health, and build from there. Like in the book Atomic Habits, James Clear talks about how we "do not rise to the level of our goals, we fall to the level of our systems" -- which, in this case, would be our health advocacy habits.

Emily

And finally, remember that no one will advocate for your health as effectively as you can. Your health is too important to leave entirely in someone else's hands.

e090da73

Yes! So this convo was great and I hope everyone else enjoyed it! Okay so we’re going to be sharing resources in our show notes - including a personalized health tech spreadsheet we mentioned, and some starter prompts for using AI tools to improve your health literacy.

Emily

This was great, I’m glad we can use our stories to help others. And for our audience — we want to hear your stories too. Have you had experiences with self-advocacy in healthcare? What's worked for you? And what challenges have you faced?

e090da73

Yeah — let us know by commenting. And know that we’re cheering you on, as you learn and grow in your ability to advocate for yourself in the medical world!

Emily

Absolutely, and remember that you’re fully capable and you can definitely take small steps at a time. So I think that’s a wrap for us today — thanks for listening, and remember - it's time to become an active partner in your own care!

e090da73

Your future self will thank you for it, and we'll be proud of you too!

Emily

We'll see you next time!