Imagine you have a child who has a full scale IQ of 70. This means that about 97.5% of the people on earth will have a higher IQ score than she does. She doesn’t have any particular illness or syndrome that accounts for it; she just happens to be on that end of the distribution of human cognitive capacity.

It doesn’t mean much about her worth as a human being, of course. I’ve met people who have IQs around 130 that I would personally feed to Walkers in the event of a zombie apocalypse. Intelligence – if it exists – is a capacity, not a virtue. You can use your brain to cure malaria or you can use it to run a billion dollar Ponzi scheme.

It does mean she’s going to have problems other people don’t have. She won’t get as far in school and she will have more trouble finding work. She’s probably not going to make a whole lot of money and will be more at the mercy of the cold world than most. She’ll need more help from others, and your grandchildren may not start out as well as they would otherwise.

Now imagine there is a medicine that for a solid part of the day let her operate as if she had an IQ of 85, or maybe even better. You will notice a difference. So will she, and her teachers, and her employers. Her paycheck. Your grandchildren’s home life.

Imagine, just for giggles, that medicine might even protect her from addiction and getting into serious accidents.

Would you give it to her?

Whichever answer you pick, does that make you a bad parent?

This article came to my attention through an old family friend. It’s about ADHD, written by a psychologist who asserts that there are a lot of things that are different about ADHD in France.

ADHD is a plenty controversial subject. There is plenty to controverse about. It’s a gender-biased diagnosis, which makes you wonder whether it’s a legitimate gender bias (like breast cancer) or some subtle and harmful stereotype being played out in the medical field. Then there’s the question of whether we are “medicalizing bad behavior” and these kids need behavioral interventions and discipline. The flip side argument is maybe we need to develop more tolerant systems to handle kids with different behavioral and learning styles.

Tricky stuff.

One of her core argument I will dispense. That is the idea that the American lifestyle, loaded as it is with TV and toxic food, is ADHD-o-genic compared to the French. I don’t buy it. The prevalence of ADHD symptoms in kids, and the number of kids who meet criteria for the disorder is pretty similar almost everywhere you look. A big component of risk is genetic. Prenatal alcohol exposure and smoking probably matter; and lead toxicity is a clear cause. There may be some effects of food colorings and such, though it’s less clear if FDA approved stuff is bad, and it also looks like they might have something to do with hyperactivity in general, but perhaps removing them only helps some kids diagnosed with ADHD. If there’s a reason prevalence estimates vary, though, it’s most likely differences in methodology for making the assessments. Studies that are designed so they likely undercall the diagnosis do so, and vice versa.

I also find fault with those who say it has no biological basis and start arguing how it’s caused by “toxicity.”

The author of the article (and book) later said that ADHD is a collection of symptoms with no biological basis, and therefore “socially constructed.” Another tricky word; used as if a synonym for “wrong.” A collection of symptoms (and signs) that go together in time and place in medicine is called a “syndrome.” The author lists out the symptoms of diabetes (mellitus) and says that’s not what diabetes is; i.e. the syndrome is a consequence of diabetes, not the thing itself, which is a problem of glucose metabolism.

Which, following the logic, means that diabetes mellitus did not exist until at least the late 1800s, when removing a dog’s pancreas was shown to cause it, which over quite some time led to the discovery of insulin. Apparently, those descriptions of the syndrome written down 3500 years ago were something different, because then it had no known biological cause.

When I talk to my residents, I call this the “Excessive Eye Blinking Disorder” problem. Let’s do a little thought experiment:

Imagine you found that there is a group of people who blink their eyes 30 times or more per minute (as opposed to 15 times as average). 

Question 1: Is this a disease?

Then let’s say somebody puts these people in some souped-up 600 Tesla neuroscanner and discovered that they have a cluster of neurons in their motor cortex that are overactive relative to people who blink at an average rate.

Question 2: Now is it a disease?

I hear this in the media all the time. “People who act differently have just been found to have slightly different brains. Clearly, what we once thought was ‘psychological’ is truly  ‘biological.'”

In truth, finding a difference between the brains of people who act in two different ways should be viewed as what it is; entirely trivial. Of course their brains are different. Of course the eyelid motor neurons of people who blink twice as often are more active. Duh.

The existence of the difference is no surprise, and as in diabetes, it mostly depends on whether you have the right technology to find it. Stuff doesn’t become real as soon as you have an instrument fine enough to find the biological difference. It’s there, and eventually we get the right microscope.

Sometimes the microscope gets good enough to suprise you. “Diabetes” isn’t one thing. Sometimes it’s due to destruction of insulin-producing cells (Type I), sometimes insulin resistance (Type II).

Last point on this and I’ll stop beating this horse: We seldom find the “real cause,” and when we do there’s often a lot of uncertainty about all the steps in the chain. If we waited to find the “real cause” to call something “real” or a “disease” we would almost never get there. Case in point, Type I diabetes. First you find out it’s caused by lack of insulin. Eureka, we have the cause! Wait, why do you lack insulin? Eureka! They have no islet cells in their pancreas! Wait, why do they have no islet cells in their pancreas? Eureka! It’s due to autoimmune destruction of the cells. Wait, why the ever-loving #%$& does their own immune system destroy those islet cells?

So a set of symptoms and signs doesn’t make a disease (though it’s necessary), demonstrating a difference between two groups of people on some dimension doesn’t make a disease, a biological difference between those two people doesn’t make a disease, and in practice we don’t wait around to find the one twue cause if that’s even possible. We expect diseases to cause dysfunction or suffering, but we don’t define everything that causes suffering as a disease. Some of these things are necessary, none are sufficient. What makes a disease?

Maybe, just maybe, there is absolutely no such thing as a disease out there in the world. Maybe, in fact, “disease”  is…..

wait for it….

Socially constructed.

Maybe it’s a concept with a relatively clear center with archetypes we can all agree on; but very, very fuzzy edges. Pneumonia? Yup. There’s a qualitative difference in where bacteria are growing, it is clearly linked to the symptoms of the disease, and causes dysfunction and even death. Prototypical disease. Still, though; the disease is in the eye of the beholder. No bacterium growing in your lungs thinks, “Huzzah! Back when I was on that piece of bread I was a lowly bacillus, but now I’m a disease!” Nah. It’s just happy in a warm place with nutrients and water.

Another thing that doesn’t make it a disease: Having a pill for it. Caffeine can improve some cognitive tasks (though it’s really complicated). Is everybody who is two cups behind demented?

Not counting me. I heard that, smarta@@es.

I think this is far, far less about what’s “real” than it is what’s “right.” There is a very, very strong moral tone to a lot of these articles and positions. You do need to know what’s real to take an ethical approach to it, though.

I think there’s a fundamental assumption that if it fits neatly into the disease box, disease = biological = biological treatment. Also, in some cases, maybe it doesn’t have to be a disease, but it does have to be “biological.” If we were to think it through, hypertension and obesity both might fit these bills. We are quite happy to look for medicines for these. In the case of severe obesity, we even re-arrange people’s insides surgically, and it works. Maybe they are not diseases, but at least they’re not “psychological,” and doing something about it improves people’s lives. In some cases, a whole lot. This is not helped by the fact that people who want to treat something have to dress it up in syndromic, disease words to get paid to treat it. That’s another post.

If it doesn’t fit the disease box, and particulary if it’s “psychological,” treating with medication is “medicalizing.” It’s reductionistic, manipulative, and dangerous. There is something to be careful about here, though. Higher brain functions seem to be where we put the self. Moral worries about altering the self of someone else sure are worth a thought or two.

The evidence so far as I read it is that ADHD is a dimensional, not qualitative, difference. It may fit awkwardly into the disease box, but there are objective measures of its severity and plausible biological correlates.

Interestingly, I seldom hear the argument that people who meet criteria for ADHD don’t need some treatment. Usually it’s about medication versus other things. That’s a legitimate question, so long as we agree that better is better. That sounds easy, but implicit is the question of how much better counts as better. You can’t have better is better unless it’s from medicines in which case it isn’t really better.

You can decide that there is some threshold of problems that deserves clinical attention. You can decide what counts as a meaningful level of improvement. You can figure out which treatments have a decent chance of achieving that level of improvement. You can quantify the risks of those treatments so people can make an informed decision. You can even compare treatments to see which ones do better.

We’ve really done most of that, or at least we’ve got a solid start.

I suspect our problem is this: As a culture, we have not answered the question: When is it right to alter the mental function of someone who is on the far end of a brain-based capacity with medication, when being on that end clearly causes bad things, but that does not easily fit into the category of a disease?

What would happen if people spent their time figuring that out, instead of talking about all these different versions of “real/legitimate vs. imaginary/contrived?” What would happen to all the victim-blaming, parent-shaming, and conspiracy theorizing about doctors? Could we be more compassionate, and maybe even less likely to do all those things people say they’re concerned about; like stigmatizing unjustly, mistreating, and overtreating?

I tend to think so.

Here’s my answer to the question I just posed, because I think you always have to take your own dares. I think it’s ethically correct to do so when the intent is to remediate an impairment rather than to enhance normality, when there is minimal threat that the person’s self will be fundamentally or permanently altered, and when the person involved understands what is being undertaken and consents to it.

If I were to think about it more, I might come up with other ideas. The floor is open, if anybody wants to set me straight.

Carroll’s Second Law of Psychiatry: The patient is the one with the problem.

I was at one end of a table in one of the best addiction treatment programs in the country, and at the other end was one of my counselors. For those unfamiliar with the addiction treatment system, addictions counselors are the footsoldiers of righteousness in an ongoing battle against the darkest evil of the human heart. It’s mainly a bachelor’s level job, filled by young idealistic people on the way somewhere else or more experienced people who are often on a mission; and armed with that four-year degree and accompanying inadequate salary they stand in the gap between redemption and some of the worst human depravity you will never hear. This also provides them with some absolutely bitchin’ happy hour stories.

My kind of people.

This particular counselor was a young fellow, whip-smart; quiet and calm and dedicated. We were discussing a patient who, while so far testing negative for drugs, was floundering – not showing up to groups, missing counseling sessions. Not often, but consequences were piling up. Consequences that could eventually lead to the patient exiting the program. Which meant almost certain relapse.

I asked my counselor what was going wrong. He told me a story of how he had messed up the case. He hadn’t paid close enough attention, he had missed a couple of opportunities to remind the patient of groups, he hadn’t appreciated how frustrated the patient was getting with how regimented and unyielding the place was.

There were a lot of people in the room, but this story was being told to an audience of one. In the scales balancing justice and mercy, I was the linchpin. I was either going to tell my counselor to drop the hammer on the patient and require him to do more groups, show up for his counseling and so forth;  or cut him some slack and give him some room to get himself together before he lost the one thing that was holding him together.

I’ll be honest with you (that’s a later post): This is not the least bit paraphrased nor edited. I said:

“Smart Quiet Passionate Counselor I Really Like (not his real name), you have been manipulated.”

A minor digression (you’ll see that to which I am up soon): In disorders of learned behavior, the patient, to one degree or another, wants to do something that is bad for him. That’s not to say he doesn’t want to stop it, by the way. You can want your cake and hate your waistline. Conflicting goals and desires is the human condition. For most of us, thankfully, it’s just chocolate cake – not crack cocaine. Judging by the line at The Cheesecake Factory, it’s a good thing, too. We could have a full-on Walking Dead situation.

So you are dealing with this fundamental glitch in human nature – that immediate, reliable, transient jolt of yeah, baby can take over a human life and steal a human soul. Little decisions to do some little thing over and over again, until your life organizes itself around that little thing; raising the pipe to the lips, the powder to the nose, the cigarette from the pack. Reducing a human life to a bad EDM set on endless repeat.

So that little thing starts taking up more and more life space – time, money, attention. That means other things get slowly crowded out – like responsibilities, family. Slowly, insidiously, decision by decision, cop-out by cop-out, lies and manipulation creep in. Again, that’s not to say somebody starts out wanting to be a liar or a manipulator.

People early in recovery have to manage such a load of self-loathing it’s hard for others to fathom. Imagine coming out of a haze one day, looking around, and realizing that not even your parents are willing to put a roof over your head in winter because they can’t trust you in their house.

Then imagine that you know they are absolutely right.

It is a monstrous thing to acknowledge you sold your soul ten bucks at a time for two decades, and it’s going to cost a hell of a lot more than money to get it back. The folks who manage that, who come back from that, are a fascinating bunch. They have probably taught me more about the good in human nature than anybody else. They are the reason I’ve stayed in the addictions world for so long.

That early blast of shame and remorse, though, comes just from seeing the things you know you’ve been trained by the drug to do. Yet more insidious is the ice under the water. All the little things that you do that serve your addiction, that you don’t even know serve your addiction.

Back to my counselor.

I started asking questions about our patient.He was a likeable, pleasant guy. He had put together several stints of abstinence, maybe six months at a time. Early in these periods he would be a model citizen; uncomplaining, reliable, enthusiastic at whatever occupation he found himself. Then stuff started to go wrong. Once people liked him and he was doing everything right, he started to slide. At which point all these people found ways to fill in for his minor, completely understandable mistakes. Until the occasional mistake turned into the continuous lateness, missed commitments, and then relapse. After which he became an unreliable cloud of lies and excuses, and left all those people sick of his bull@#^* and unwilling to lift a finger for him. Cut to scene of gaunt, ill, haunted looking guy with nobody and nothing, ducking into a boarded up house in West Baltimore.

Now here in front of me I have my counselor. The counselor of a pleasant, reliable patient who’s doing the right thing, mostly. A counselor who just keeps forgetting little things like reminding that patient about the group he missed last week, or to be on time to those appointments. 

Addiction is a vicious, sneaky bastard. Sure it will magnify your weaknesses. Its true evil, however, is in its capacity to turn your virtues into vices. It twisted our poor patient into spending all the goodwill he obtained early in his recovery to have other people cover for him while he relapses. In the process, it cost him every single one of those people.

What might happen, one wonders, if somebody who cared about him were to redefine the situation for him? To not accept the role of the one who helps him by bailing him out; and instead to ask how did he get me to act just like his old boss, his mother, his sister? How did he turn me into the guy begging for mercy on his behalf while he gets closer to a relapse?

What if, in fact, that is his relapse? Relapses, you see, happen well before the money and the pills change hands. They are a departure from the behavior pattern of recovery, and a slow return to the behavior pattern of using.

It’s a lesson hard learned. Doctors, counselors, therapists, the lot of us want to help. Patients, mostly, want help; at least the ones who keep showing up. The addiction, though, it wants to come back. It wants to turn you against each other. It wants to twist your head around into thinking that giving it room to sink its hooks into him deeper is helping him out. It wants to convince him that asking for a hand up from that nice counselor is a way to get back on track, instead of a way to go further down the wrong road.

Anthropomorphizing much, doc?

Yeah, I am. I’m an obstreperous cuss. It’s my job to see what’s happening. One way I can do that is to decide to be an opponent, not a pawn. I hate to get beaten. It keeps my eyes clear.

He’s been playing the game by the enemy’s rules for too long. That’s why he has me. It’s my job to show him that. It’s only when we’re both playing the right game that we can be on the same side.

The first question we want to ask is, “How can I help you?” It probably should be second.

The first is, “How is this your problem?”

The Fundamental Law of Prognosis: Them that shows up gets better.

I have this one patient I saw that.

[Nonmedical people: I am not, in fact, clairvoyant. It’s just that “I have this one patient…” begins a certain kind of story; a story of very bad things happening. Such stories cause reflexive wincing in medical people. I’m just messing with them. No need to clear your browser history. Keep reading.]

This is not one of those stories, medical people. Promise.

I have this one patient who I will call Sylvia and I am going to alter all kinds of other things about her except the point of this story.

Sylvia is sick as hell. Sylvia has bipolar disorder (or, archaic but more accurate, manic-depressive illness). She was reasonably stable until she had to stop this one medicine. After which everything went to hell. Severe depression, psychosis, catatonia, the whole nine. Hospitalized several times per year, constant medication changes, none of which worked. After one of those med changes, she had a protracted mania and did a lot of stuff that really effed up her life. She came under the care of a really good doc, who got the mania under control and sent her to me. The scene is set.

I am about to rant. I will mark this out with the following symbol: ******.

******RANT*******

It is almost impossible to understand how bad psychiatric diseases are unless you’ve been through it. One thing that makes that even harder is that people use words with two meanings, but think they only have one.  For most people, “depression” is the feeling of getting a crappy performance review at work; or how you feel the first month or two after a breakup.

And then there’s depression, or melancholia as Hippocrates called it. Which is like being attacked by a horde of dementors except the dementors don’t even have the basic decency to exist and attack you because you just feel that way for no damn reason at all and there ain’t no patronuses to be found.

Care to add a little more torture? Well, manic-depressive illness can do that for ya! Try catatonia! You can’t even talk, move, or feed yourself. Or mania! Imagine having boatloads of energy, not having to sleep for days on end, doing a thousand things, and feeling ten feet tall and bulletproof. Good deal right? Until you crash back into that depression thing, and realize all that time you were feeling ten feet tall and bulletproof you did a lot of really stupid stuff that you would never, ever do; and as a bonus you spent yourself broke on weird online scams and lottery tickets.

So when people who haven’t been through it talk about “being a little bipolar” it’s like saying “I’m having a malignant melanoma moment now,” or perhaps “I’m feeling a tad stroke-y.”

Then there’s the “everybody gets depressed” line. People need to toughen up and get through it, right? Why is everybody trying to medicate away normal feelings with “happy pills?” Well, if you’re in the middle of a major depressive episode, you’re probably longing to feel as good as you did on a normal bad day. And happy pills, my ass. I have yet to see anybody melting down their Prozac (little R-in-circle thing) and shooting up in the doctor’s office for that SSRI rush. So there’s that.

I think we need to find some new words for these things. Something so polysyllabic in a language so long-dead that nobody will mistake it for any normal experience. “Malignant Melancholic Syndrome,” maybe.

The points of that rant were:

1. Psychiatric diseases are entirely abnormal.
2. Lots of psychiatric diseases are really, really bad.
3. The people who have them often get treated like they’re punks who can’t get over a bad day or two by people who have no clue whatsoever how badly they are suffering.
4. The people who have them who try to get treated for it catch even more crap, as if they are in cahoots with a conspiracy to drug away all normal emotion.

*********RANT OVER*********

Sylvia’s prognosis, right on its face, sucks. She’s got every risk factor for a chronic, severe, treatment refractory course; and, let’s just say it out loud, death.

I do my thing. I dig through a mountain of records and plug stuff into my handy compulsive freak’s timeline making software. I find out one good thing – there’s one medicine that clearly prevents her manias. Then I find out one other thing. Sylvia’s been on close to a dozen antidepressants, and she’s only had a single adequate trial of one antidepressant in 5 long years.

How can this be, you ask?

All of the medicines take bloody forever to work. With antidepressants, it takes four to six weeks to be sure it’s a failure; and that assumes you’re at the right dose. Getting there can take weeks, too. The side effects, though – the side effects you get right up front. Antidepressants are a lot better now, but still you’re going to have all the bad effects while waiting around for any benefit. About a third of the time, that benefit never shows up, and you’re a couple of  months down the road and back at square 1.

Now, when you go into the hospital and you’re sick as hell, people try to help. They do that by changing stuff. Even if that stuff had been started less than a month ago. Even if the doses weren’t maxed out. Hell, the insurance companies practically force you to do it.

Reviewer: “Have you made any med changes in the last ten minutes?”

Doc: “Ummmm… No. We just started it and it takes four to six weeks to work. I guess I could use some bulls@!# line about how I’m ‘considering adding something’ to make you happy…? “

Reviewer: “Nah. That won’t be necessary. We’ll come up with some other reason to deny care anyway. I mean, he doesn’t have a knife to his throat right this minute, and the policy is written so I can deny if he’s not ‘acutely suicidal,’ which itself is completely impossible to objectively define. So, you don’t have a leg to stand on. Have a good day.”

This constant pressure from patients, payors, and your own perfectionism is one of the reasons (prepare for terrible revelation) that heartless algorithms can sometimes outperform doctors. While the doctors are busily individualizing treatment; and the insurers are looking with a baleful eye and asking “why aren’t you doing something?”, the heartless algorithm says, “Screw the side effects and inadequate response! Sucks to your ass-mar! You haven’t had an adequate trial of this medicine so suck it up and stick with it.”

[I will personally award 3 cool points to the first person who gets the “sucks to your ass-mar” reference.]

Sylvia now has one good prognostic factor. Instead of having severe, treatment refractory manic-depressive illness; she now merely has severe untreated manic depressive illness.

If that’s good news, you’re pretty starved for good news.

There is one prognostic factor that you can’t find in any epidemiologic study, though. One I don’t know she had for several weeks. One I have started to think may be the only one that really matters.

You see, there are patients who don’t show up. There are patients who are pretty good about showing up. There are patients who show up. Then, there is Sylvia.

Sylvia shows the f#&** up. Sylvia shows up the way Cal Ripken, Jr. played baseball. Sylvia shows up like Georgia O’Keefe painted flowers. Sylvia shows up like Bruce Banner gets road rage. She is the tenth-level black belt grandmaster of showing up.

She showed up for weeks when we tried the first antidepressant, ever so slowly and carefully to watch for that mania. Then she developed an allergy. Back to square one. She still showed up.

Partial responses to several medicines. Months of instability, grinding improvement but constant setbacks. Now, she is officially treatment refractory. So much for that prognostic factor. Yet still, she was in my waiting room, no less than five minutes early, every @&&*ing time. I check her blood levels, and they are always exactly the same. She barely misses a single dose.

Time to get fancy. Combinations, high dose trials. Weeks and months more. Then, one month, one entire month, the depression goes away. During which time I am sitting on my hands, waiting for the disease to snatch this hard-won victory back, and for the mania to happen. It never does.

There is a lot more. The year or two to get the first job, which she still has, because even though she had minor episodes, still she kept showing up.

A couple of years of trying to find a way into life when everybody her age had advanced in their jobs, gotten married, and started having children. One day a week, every week, every one of those years, she was in my waiting room. On average, ten minutes early.

I have been looking after her for close to  a decade now. There was the one relapse that scared the hell out of me, but with the help of a really good inpatient doc, she actually came through better than ever.

Now she’s employed, in a solid relationship with a guy who is good for her, and about to be a stepmother. You wouldn’t know her from anybody else. Me, I have the singular honor of knowing she is a real life no – sh#t superhero. She spat in the devil’s eye, and in her quiet, pleasant, implacable, unrelentingly badass way kicked his ass right up the block.

She is not the only one. There was the young guy whose symptoms were so complicated there wasn’t even a category for him in DSM-IV. He told me the story about how he had to bury his face in a pillow at night so his wailing would not bother the neighbors.  Never missed a single appointment. He didn’t get well. I’m not that good. I don’t think any of us are that good, yet. He did get better, though.

The one who was in a wheelchair in the day hospital? Showed up every day for months, and walked out on his own hind legs.

If I had what Sylvia has, I might well be dead. Many people are. I have never correctly finished a single course of antibiotics in my life, and I’m a bloody doctor. I know better, and my wife still had to drag my obstinate ass in to the doctor when I was coughing my guts out and had a fever of 104. It was a pneumonia, of course. I figured it would pass.

I suck as a patient. I’m a better doctor. I’m not the best in the world, or for that matter the best in the building. I do show up, though.

Careful readers (or compulsive freaks like your esteemed author) might have noticed that algorithm thing had more dropouts than usual care. Maybe I’m romanticizing things, but I suspect there’s some other part of doctoring that matters besides sticking to the protocol. Algorithms don’t listen. They don’t give a damn. They don’t cheer and high five when you get that first date or that first job after you’ve been on the DL so long you don’t know if you can ever get off the bench again. 

I think the people who show up need somebody to show up for. So I show up, for them. Also, of course, it’s the only way to get better. I want to get better. I want to get better for all of them. I’m no superhero, but I know a few, and I would hate to let one of them down.