Before we jump in, I want to apologize for a very long and overdue part 2.
Part 2 of How to Become Really Good at Being Sick has taken me far longer to write than I intended, but I have a pretty good excuse:
I’ve been busy LIVING LIFE.
And honestly? I’m not sorry about that part.
I’m now about two months out from my May-Thurner surgery, and I feel better than I have in a very long time. Things are improving. My body feels different. My energy feels different. I’m doing more, going more places, saying yes to more things, and spending significantly less time thinking about being sick.
There are still appointments, symptoms, and meds. There are still things I’m working through (duh, it’s chronic). My body certainly didn’t get the memo that one surgery was supposed to magically fix everything, but things are moving in the right direction and I am feeling much happier.
There’s something wonderfully ironic about putting off a blog called How to Become Really Good at Being Sick because I’ve been too busy getting really good at living and enjoying it.
So, with that long-overdue life update out of the way…
Class is officially back in session!
Chapter 5: Become the CEO of Your Health
At some point in your health journey, you’ll realize something slightly terrifying but also empowering.
You’re in charge here.
Not medically, of course. Please don’t diagnose yourself or perform your own surgery.
When it comes to keeping your healthcare moving, you are often the person managing the operation. Your doctors have patients before you and patients after you. Your specialist may see you once every three months. Your surgeon might be heavily involved for six weeks and then disappear from your life completely. Your physical therapist sees one side of you, your cardiologist sees another, and your primary care doctor is somewhere in the middle trying to keep up with all of it (shout out to mine for being incredibly proactive and involved).
The only person who attends every meeting, every appointment, every test? That’s you.
Welcome to your promotion! You are now the unofficial CEO of an organization you never applied to run.
You’ll learn very quickly that healthcare doesn’t always move unless someone moves it. A referral being sent doesn’t mean an appointment gets scheduled. A test being ordered doesn’t mean insurance approved it. Getting the scan doesn’t mean the specialist received it. And hearing, “I’ll reach out to your other doctor,” certainly doesn’t mean that conversation actually happened.
So you become annoyingly proactive. You call. You follow up. You check the portal. You ask whether the referral was received. You make sure the imaging got transferred. You ask whether the prior authorization was submitted. And you’ll send enough “Just checking in on this…” messages to last a lifetime.
You’ll also learn that every appointment should leave you with some understanding of what happens next. That doesn’t always mean another test, procedure, or treatment. Sometimes the next step really is waiting. But you’ll want to know what you’re waiting for, how long you’re waiting, what happens afterward, and who is responsible for making that next thing happen.
You’ll start asking questions like, “When should I follow up?” “Who is ordering that?” “If I don’t hear from them, when should I call?” and “If this doesn’t work, what’s Plan B?” You don’t want to be leaving appointments with a vague sense that someone will eventually figure out what happens next.
Then comes the fun part: managing everyone involved.
One specialist wants another specialist’s opinion, so you make sure they connect. Your surgeon needs clearance from cardiology, so you get that moving. One doctor needs imaging from another hospital, so you track it down. Someone says they’ll discuss your case with another physician, and two weeks later, you’re the one asking whether that conversation really occurred.
You’ll also discover that managing a medical team isn’t just about logistics. You’re managing people, and just like any workplace, every person has a different personality, communication style, philosophy, and, yes…sometimes an ego.
You’ll learn which doctor loves when you show up with research and which one would rather you start with your symptoms. Which specialist wants every detail and which one wants the 30-second version. Which doctor happily calls another physician and which one prefers everything to go through official channels. Some are incredibly collaborative. Some are fiercely protective of their specialty. Some want to hear what another doctor thinks, while others may need a little more convincing before they’ll consider an idea that didn’t originate in their own office.
There’s also the particularly interesting situation when two highly qualified doctors have completely different opinions about the exact same thing.
That’s when you develop an entirely new skill: learning how to bring different medical perspectives together without turning yourself into the referee. Instead of “Dr. X says you’re wrong,” you learn to say, “Dr. X had a different interpretation of this. Can you help me understand why you’re seeing it differently?” You’re not choosing sides; you’re trying to understand where the disagreement comes from and what it means for your care.
Over time, you learn how each person on your team works and how to communicate with them effectively. It’s a strange skill no one tells you you’ll need, but it matters. The best collection of specialists in the world isn’t automatically a great healthcare team. They still have to communicate, respect each other’s expertise, and ultimately work toward the same goal.
Sometimes, you’re the person who has to make that happen.
Chapter 6: Get Comfortable advocating for Yourself
If becoming the CEO of your health teaches you how to keep your care moving, the next lesson teaches you what to do when you don’t necessarily agree with where it’s moving.
At some point, you’re going to have to disagree with someone who went to medical school or ask them to explain themselves. You might have to tell them you aren’t comfortable with the plan or ask for another opinion. The first few times you do it, you’ll probably feel like you’re breaking some unwritten rule.
You’ll carefully choose your words so you don’t sound “difficult.” You might even start with, “I’m sorry, but…” before asking a completely reasonable question about the thing happening inside your own body.
Eventually, you’ll learn that advocacy isn’t confrontation. It isn’t walking into an appointment convinced you’re right and your doctor is wrong. It isn’t demanding a specific test because Google told you to. It definitely isn’t about trying to become the doctor in the room. It’s about becoming comfortable enough to participate in your own care.
You’ll begin saying things like, “I understand the test was normal, but I’m still having symptoms. Where do we go from here?” Or, “Can you help me understand why you don’t think this needs further investigation?” Sometimes it will be as simple as, “I’m not comfortable with that plan yet. Can we talk through the other options?”
Sometimes you’ll need to ask questions that feel considerably more uncomfortable: “What diagnosis are you most concerned about missing?” “What would change your mind?” “Could we be attributing this to one of my existing diagnoses and overlooking something new?” or “I know my body, and something has changed. Can we explore that before we assume it’s more of the same?”
You’ll probably discover that one of the hardest things to say in healthcare is also one of the simplest:
“I don’t think we’re done looking.”
That doesn’t mean you’re convinced there’s some rare diagnosis hiding around the corner. It means symptoms don’t stop existing just because the first test was normal. Sometimes the answer really is that nothing dangerous is happening, and that’s great news. But “good news” and “problem solved” aren’t always the same thing.
Advocating for yourself occasionally means asking for a second opinion. This can feel strangely personal at first, like you’re somehow cheating on your doctor by seeing another one. You’re not. Medicine is complicated. Two excellent physicians can look at the same information and interpret it differently, especially when you’re dealing with complicated or overlapping conditions.
A second opinion doesn’t automatically mean the first doctor was wrong, either. Sometimes the second doctor agrees completely, and that confirmation is valuable. Sometimes they notice something different. Sometimes they suggest another approach and sometimes they simply explain the exact same thing in a way that finally makes sense to you.
You’ll also discover that advocacy can mean saying no.
When you’ve spent years searching for answers, it’s easy to assume that more medicine is always better medicine. Another test? Sure. Another medication? Let’s try it. Another procedure? When can we schedule it?
Eventually, you’ll start asking different questions. What will this test actually change? What are the risks? What happens if we wait? Are there other options? What’s the goal of this treatment? How will we know whether it’s working?
Advocating for yourself isn’t about getting everything you ask for. Sometimes your doctor will explain why the test you want isn’t appropriate, why the treatment you found online doesn’t make sense for you, or why waiting really is the safest option. Being heard and being agreed with are not the same thing. A good healthcare relationship needs room for both.
Some of the best doctors you’ll meet will disagree with you. They’ll challenge your assumptions, explain their reasoning, tell you when the evidence doesn’t support what you’re thinking, and expect you to ask questions right back. That’s not a bad relationship with a doctor. That’s collaboration!
There will also be times when you don’t feel heard. You’ll explain yourself again. You’ll ask the follow-up question. You’ll request another opinion. Occasionally, you’ll decide that a particular doctor simply isn’t the right person for your team.
For what it’s worth, this is a lesson I’m still honing. I’ve been navigating healthcare for most of my life, and I still struggle to advocate for myself. I still leave appointments wishing I’d asked something, worry about sounding difficult, or hesitate to challenge someone with far more medical training than me.
I’ve gotten better, but I don’t think advocacy ever becomes completely comfortable. Maybe that’s the point. You don’t have to feel confident to speak up. You just have to do it anyway.
The whole purpose of advocating is making sure you’re part of the conversation when decisions are being made about you.
Chapter 7: Become a Pattern Spotter
By this point in the curriculum, you’ll have developed another strangely useful skill you never asked for: pattern spotting.
Spend enough time living in the same complicated body and you start noticing things other people can’t. You’ll notice that a symptom gets worse after you eat, when you stand too long, when you haven’t slept, when the weather changes, after certain medications, or seemingly every third Tuesday for absolutely no logical reason.
Doctors see snapshots of your health. You get the time-lapse.
You’ll start paying attention to what happened before a symptom, how long it lasted, what made it better, what made it worse, and what else was happening at the same time. Sometimes the important clue isn’t the symptom itself. It’s the company it keeps. It likely will start to consume your thoughts, but it is important it comes from of a place of understanding your body and not from a place of obsession or worry.
You’ll also become incredibly familiar with your own baseline, which gets complicated when you’re chronically ill. “Normal” might not mean feeling good. Your normal might include pain, nausea, dizziness, fatigue, a weird heart rate, or any number of things that would send someone else straight to urgent care.
There are two very important phrases:
“This is normal for me.”
And, perhaps more importantly:
“This is not normal for me.”
That distinction matters. When you’ve lived with symptoms for years, it becomes surprisingly easy to dismiss new ones because your body already does weird things. Sometimes one of the most valuable things you can tell a doctor is, “I’ve experienced this symptom a thousand times, but this time feels different.”
Pattern spotting makes you much better at explaining what’s happening. Instead of saying, “I feel terrible after I eat,” you might eventually say, “About 20 minutes after I eat, this starts, it lasts about two hours, gets worse when I’m standing, and improves when I lie down.”
That’s much more useful information.
But! There’s an important distinction here: pattern spotting isn’t diagnosing. The goal isn’t to walk into your doctor’s office with a color-coded spreadsheet and announce that you’ve solved the case. Although, after enough years of chronic illness, you may be extremely tempted.
Patterns are clues, not conclusions.
Sometimes two things happen together because they’re connected. Sometimes they’re completely unrelated. Sometimes the symptom you’ve blamed on Diagnosis A for years turns out to have absolutely nothing to do with Diagnosis A. That’s why your job is to notice the pattern and bring it to the people who can help determine what it means.
You’ll absolutely get things wrong. I certainly have. You’ll convince yourself you’ve found the connection only for testing to prove otherwise. Then, every once in a while, you’ll notice something seemingly insignificant that turns out to be very significant. That’s part of becoming really good at being sick. You learn to pay attention without assuming you have all the answers. You become curious about your body instead of simply reacting to it.
After enough years, appointments, tests, treatments, and “that’s interesting…” conversations, you’ll learn something important: your body is constantly giving you information. You just get really good at noticing when the story changes!
So, after seven chapters, I suppose you’re officially qualified to be really good at being sick. Congratulations? Your certificate is probably stuck in prior authorization.
If there’s one thing I hope you take from Parts 1 and 2, it’s that none of these lessons are really about becoming better at being sick. They’re about becoming better at navigating something you never thought you would have to navigate. Learning the language. Asking better questions. Building your team. Keeping your care moving. Speaking up even when it’s uncomfortable. Paying attention to your body. Figuring out how to keep living while you do all of it.
You won’t always get it right. I certainly don’t. There will still be appointments where you forget the question you swore you’d ask, doctors you don’t click with, symptoms that make absolutely no sense, and moments when your carefully assembled healthcare operation feels like it’s being held together with portal messages and sheer determination.
You learn. You adapt. You get better at knowing what you need and finding the people who can help you get there.
Maybe the biggest lesson in this entire ridiculous curriculum is that getting really good at being sick eventually gives you a little more room to get really good at living, too.
That’s the part I’m enjoying learning the most.
Thanks for reading.