Medical Book Review: The Puzzling Case of the Doctor Who Wouldn't Stop Talking About Munchausen's

 

Okay boys and girls and theys and thems, I read another medical book and wow, was it weird. This one started out with a good premise. The goal was to help patients get an accurate diagnosis, or failing that, zeroing in on what else might be causing the problem. It has a fairly intelligent framework around that, and I started to get excited that maybe this book would be something special.

But then it dived into what was referred to as 'self harm'  and refused to come up for air ever again. Self harm is essentially attention seeking behavior by patients to the point of hurting themselves or undermining care. Aka Munchausen's. And I think this doc just really wanted to write a book about it because he abandoned his core premise and hyperfocused on this to the point where it got weird. 

Thus, the book doesn't end up being all that useful. If anything, it teaches people with Munchausen's how to hide it better. As I was reading, I was like, no, dude, STOP. But the author just keep going. Neatly outlining all the red flags. Like a machine. An absolute Robodoc of what to do that I'm sure the medical system would much prefer no one know about. But Robodoc's gotta robot so...

Thankfully it's an old book that I don't think too many people read.

I did get one good nugget out of it. I hadn't realized that laundry lists of symptoms were a red flag for mental illness over any actual disease process.

Looks at my laundry list o' wtf and sweats... 

I mean, I am over here working with genetics hoping to get a unified diagnosis for most of my shit, but I'm an odd duck. The online chronic illness culture these days is actually all about making videos of 100 Things That Are Wrong With Me: An Important List With a Sound Track.

And then they pull that at their appointments and are mystified when doctors don't respond well.

They pee in the pool for everyone. (And make videos about it just to make sure no doctor goes untriggered.)

Look, if it takes a half hour just to go over your symptoms--not your history, just symptoms--you might as well just wear red flags to the appointment. Get a hat with a red siren on top while you're at and let that bitch whirl. Maybe do a dance...

I mean, I'm fortunate in that most of my stuff is visible on imaging and documented and I'm an old hag so they expect my wheels to be flying off now, but still. It's very easy to push the crazy pants patient button in my experience.

I've actually coached the teen on this. Teens and tweens right now are big on these laundry lists of all the things and they don't know enough A&P to tell what's important. And to be fair, that's not their fault and medicine should be less hair triggery about laundry lists. People can't always tell what's important and the things that bother them the most are often not the most revealing in terms of diagnosis.

But I've been around and I've seen some improvement in my care with certain approaches. So the framework I try to use is as follows...

Function is what matters. What is impacting your function the most? What function have you lost? 

Don't lead with pain. Especially if you're still managing daily life despite it. No one cares about pain (they should, but they don't) and the system largely doesn't treat pain anymore either--we're in a cycle where everyone's an addict even if they're on nothing and we don't really have very good pain management. Expect very little help with pain. 

Pain is too common for too many different issues to be much of a useful data point. Extreme pain, point specific pain, obvious injury pain is a little different, but even then it's not as relevant as you'd think.

Fatigue is also too non-specific. Every illness has fatigue as a symptom. It's not really helpful to focus on it. Falling asleep in the middle of working, that's important. Being tired all the time...that's 99.999% of humanity and it's difficult to sort out what's coming from a health issue that should be treated vs. the fact people stay up too late binging Netflix.

Also, most people don't understand what clinically relevant fatigue is. I think the best example I can think of is someone who told me they thought they had adrenal insufficiency too....while training for a marathon and working two jobs. That's not illness related fatigue, guys, and it never will be. 

Fatigue is profound. You can't wake up, you can't go, you don't function. It's not doing everything and feeling tired...because of course you're tired, you're doing too much--maybe start with the obvious and take some down time, you know? 

Another example, when I had mono, I suddenly had to put my head down in class and I couldn't stay awake. My professor was the one who suggested maybe I should go to the clinic. Up to that point I'd been an enthusiastic participant in class, not a zombie crashing on her desk before the lecture even started. Marked, significant change in function...that's fatigue.

Oh look...there's that word function again.

And even with the mono, the most clinically relevant piece of information was not the fatigue. It was the golf ball sized lymph nodes bulging in my neck.

Medicine just has no ability to discern the importance of fatigue. There's no test. No tool. And everyone saying they're tired has made physicians numb...fatigue doesn't register. 

Marked fatigue that impacts function is more relevant. Even then, they'll first screen for the obvious, thyroid, iron, maybe b12, maybe d, look for infection etc... but that's not bad. Starting with the basics is useful. You should rule them out and they do affect a lot of people.

The problem is once physicians run the basic labs and they all come back normal, they pronounce you fine and then quit on you. 

My liver tumors have never thrown a bad lab level. Not once. So despite a gross anatomical deformity in my stomach that would draw commentary from physicians, no one ever investigated further. Because the labs were fine AND the thresholds for accessing imaging are so high, the system, by design, left me to fester almost to the point of needing a transplant.

I was set up to suffer with the world's healthiest blood work. It's perverse. This is medicine. Get used to it and be ready to not quit even though your physician has. Probably how to do this needs its own post...

Okay. Moving on...

Everyone has anxiety anymore. Everyone.

It's so bad there's actually a clinical psychologist on Youtube giving lectures and guided meditations about 'dark times.' She acknowledges the bad stuff happening is real and tries to help everyone synthesize and cope with the world's most expensive, slowest moving apocalypse. 

Not being anxious is what's unusual at this point. 

(Also, while I think she's very smart and very talented, I had to stop watching because it was creeping me out too much to have someone validate how real the mess we're living in is. I'd rather not confront it so frankly and directly, even couched as it is in a psychological framework. Her videos gave me a growing sense of horror as opposed to grounding and centering. Your mileage may vary on that however.)

All this to say, unless you actually intend to trigger a psych referral, shut up. Seriously. Shut up.

If those are fighting words for you, hang on a second and keep reading.

There's nothing wrong with needing mental healthcare BUT medicine uses it as an easy out. Focus on function or you'll have a missed diagnosis and gain a bunch of weight on antidepressants that you probably don't need (and research is increasingly showing mostly don't work). And once the mental health box is ticked off it can be very difficult to get medicine to see anything else. 

The nasty trick with this is once you gain fifty pounds because of the antidepressants, medicine will blame everything on your weight while refusing to recognize the fact they caused it, and further deny and delay care. And they won't help you with the weight gain to boot (although, with the advent of medications like Ozempic, maybe that will change). Some do no harm, right?

Tread carefully. You should be open to the idea that your issues could have roots in mental health, but you don't want medicine to immediately punt you to psych, either. You want a full work up. A thoughtful analysis. Don't cheat yourself out of it. 

Your symptoms are like a Find the Difference picture. You need to highlight the things that will help reveal a diagnosis, not dwell on symptoms that occur in a huge percentage of issues. Learning what's relevant is tricky though. Which is why everyone who can manage it should learn as much A&P, Biochem, Microbiology, and Pathophysiology as possible.

 

Get your symptoms down into a thirty second explanation. Be succinct. Don't spiral. Frame things well. One of the things I say now is 'I'm following up on some genetic test results.' That gives everyone the macro view and it establishes the legitimacy of what I'm going to say next.

Important caveat: If it's not textbook, it'll take forever to get diagnosed. I mean, just look at what happened with my liver, right? 

If you happen to fall into a blind spot of medicine...same problem. What's a blind spot? It's dismissing an adrenal tumor as an incidentaloma and then refusing to investigate an endocrine cause of medication resistant hyptertension for ten years. 

They can't see what they're told not to see, and where no one is looking, nothing will be found. Unfortunate, but true. (One of the weird things about me is I often look for what's not said, for what's missing, for what's not there. It's been a useful mental model in business and it would work well in medicine, but it's not a way of thinking that typically occurs to people.)

If you fall into either of these categories, expect it to be a major cluster. 

Sometimes you have to go to a doctor for a while so they can see you enough to think differently about your case. You almost need to show them you're not completely insane or lit. Which is annoying because they are often dismissive to the point of gaslighting, but it can be effective to just keep showing up. Yes. I took the med, did the therapy, and it did nothing, I still can't xyz.

Other times, you have to wait and tough it out until more wheels fall off and something they deem clinically relevant emerges or you somehow meet the threshold for ordering more advanced imaging or testing. The unfortunate reality of this is it often requires patients to suffer some degree of damage or harm. 

I stumbled onto the genesis of this framework from my experiences as a patient who was also a mom. It started primarily because opiates don't work for me and I was often in the ER by myself (with a small kid and no help, hubby would be on baby duty) and I wanted to be able to drive home if I wasn't admitted. I expressly did not want opiates from the ER because I still had to mom, you know? Advil and Tylenol (or IV Toradol) work great for me so I'm never in the ER to treat the pain itself.

This 'don't want opiates, not here for opiates' is what led me to focus on function and it has ended up being one of the most helpful approaches to engaging with the medical system.

The spiel that evolved as a result was I don't care that I have pain, I care why I have pain. This isn't normal. I can't tell if I'm okay. I can't x,y,z <--list of activities I couldn't do. Sleep. Lay down. Walk. Eat. Etc... 

When one of my liver tumors went nuclear, I could barely talk or breathe and I couldn't stop shaking. There was pain, but I was so distracted by my body's reaction to it, I didn't really feel the full brunt of it. And I felt like something was ripping inside me (the tumor was internally hemorrhaging). I couldn't even drive myself to the ER--I can usually drive even when pretty sick, this was beyond that. 

Fuck pain meds, fuck the pain, tell me what the fuck is going, know what I mean?

(So naturally they gave me morphine for the liver tumor lol. That just made me tipsy for a few minutes and was of no use at all and I was discharged with no diagnosis. See the part about not being textbook. Sigh.)

Part of the reason why it's so hard to get a diagnosis is patients don't know what they don't know so they think everything is important. The doctor gets overwhelmed by the sheer amount of information taking up the small amount of time they are allowed to spend with the patient and it impacts their ability to think their way through the noise unless there's something that signals a clear pattern. The defense mechanism is to either get dismissive or suggest you need an antidepressant.

Patients then get more and more anxious, more and more upset. They have no idea how to improve the situation so they read stuff online or watch Tik Tok videos full of laundry lists. It sounds like a great idea and they start writing their own lists and bringing them to appointments. The doctors only see red flags, and no one has a good time and it's a giant mess.

So kill the laundry lists. They aren't helping. It registers as attention seeking. Pain and fatigue don't matter to medicine like they do to you. Focus on function. Get the spiel down to your top three symptoms that aren't pain or fatigue. Everything else you let come out as the doctor asks questions. That will maaaaybe help them focus and improve your odds of a diagnosis, or at the very least, the dumpster fire you end up with will be very efficient.