Tag: fibromyalgia

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Acronym Syndrome

A year or so ago, Stockwell Day (a Conservative cabinet minister, in case you’ve forgotten) was defending a number of initiatives by the Harper Government to “strengthen” the criminal justice system. By “strengthen”, he meant “make people suffer more”. When a reporter asked what the reason for this was, considering that the crime rate was actually in decline, Day famously replied that “unreported crime” was on the increase.

I think Day should have set up a website first. “UnreportedCrimes.ca”. Then people could report their unreported crimes and we would have a better idea of the scale of the problem. He should have invented an acronym for it — UCD for “Unreported Crimes Disorder”. He would have sounded more authoritative if he had said, “of course, UCD is way up over last year, and URPCA is also on the increase. (Under Reported Perception of Criminal Activity). He might have added that if a citizen sees any activity take place which is not clearly a known legal activity then it should be treated as an unreported crime. And reported.

The problem is, if he had done this tens years ago, the numbers would still have declined. Because, after all, the rate of crime really is down, if you look at actual facts, so the amount of reported unreported crimes would also likely have declined. Do you see the problem?

Similarly, or not, there is a website for “The Invisible Disabilities Association of Canada”. It’s about two particular “syndromes”– I don’t know what to call it exactly– myofascial and fibromyalgia. Your first clue: myofascial is not in the dictionary. That is because it is not a real word. It is a made-up word.  That means it was just discovered– or just invented.

Now before I go any further, I want to make it clear that I believe it is quite possible that some people in this world, particularly in the affluent developed countries, really do suffer from tiredness, sore muscles, aches, and pains. In fact, it is quite possible that all of us do, to some extent. In fact, it is quite possible that life, in general, sucks. I’m not being flippant– life generally sucks. You make the best of it if you can, but it sucks.

I don’t care about that. I do care about bad science and irrationality, because those things lead to trouble.

So when this website informs me that fibromyalgia is diagnosed when “other illnesses and conditions are ruled out”, I am astounded. Let’s say you meet a person. Are you French? No. Are you British? No. Then you must be Chinese.

Fibromyalgia, we are informed, affects either the upper half of the body, or the bottom half, and can affect the right side or the left side. I am not making this up– check out the website.  [The website is out of business.]

Fibromyalgia consists of general aches and pains and tiredness. That’s good– because if it only affected specific parts of the body in a specific way, you would know when you didn’t have it.

Now, I have no idea how you would know if your aches and pains and tiredness are a syndrome or if they are just aches and pains and tiredness, or if your life sucks and you hate making the effort and you just want to veg out on the couch and you don’t have the courage to get out there and engage the world…. I don’t know. Nobody will ever know.

According to the website:

Generally people with Fibromyalgia state that they hurt all over, especially in the parts that are used the most. Stiffness, especially on waking, sleep disorders, irritable bowel syndrome (see separate sheet), irritable bladder syndrome, premenstrual syndrome, restless leg syndrome, headaches (especially migraines and tension headaches) (see separate sheet), muscle spasms, cold intolerance, TMJ, cognitive difficulties, numbness and tingling in the extremities are some of the symptoms. Other common symptoms include a decreased sense of energy, disturbances of sleep, and varying degrees of anxiety and depression related to patients’ changed physical status.

“Irritable bladder syndrome”? “Numbness and tingling”? “Cold intolerance”?.

Think about how it sounds if you say “I am cold”. Now say, “I have cold intolerance”. Different effect, isn’t it? Now try: “I have cold intolerance syndrome”. I will rush out and get you a blanket.

All of it sounds like the normal wane and flow of everyday physical life. It gets cold, it gets hot. If you move, you use energy, and if you use energy you feel tired, and if you feel tired you want to sleep, and if you feel restless, you have “restless leg syndrome”.

Why? Because a label is a label. Why did you stop going to work? Why do you sit on a couch all day watching TV and eating potato chips? Why are you fat?

If you think you have fibromyalgia, I’m not saying your symptoms are not real. I’m saying that you don’t have something that is left over if nothing else can be diagnosed. I’m saying that you have no way of knowing how tough it is supposed to be to get up in the morning or to get out of the house and engage with the world. You say, I don’t know how real your symptoms are. You don’t know how real my symptoms are. Neither of us knows where the line is between attitude and illness, but I know that any illness that can affect the upper half of the body, or the lower half of the body, or the right side, or the left side, and fails to produce any empirical manifestations, hasn’t earned the right to an acronym.

Your last refuge: you don’t know what it’s like to not want to make the effort. And I admit that we have something pure there.

Of course there is an acronym. Developing an acronym for mythical conditions is essential to selling these conditions to the public. So fibromyalgia becomes “FMS”. I think it is believed that the general public will be more easily convinced of the reality of any condition if it has an acronym, especially if it has the word “disorder” in it.

PTSD. SARS. ADHT. TMJ. MPS.

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The Diagnosis

It is so important to give it a label.

You feel tired. You are bored. You are frustrated. Maybe you’re also not very bright or ambitious. You don’t want to tell people you are tired and bored and frustrated and not very ambitious, because that would make it sound like it’s your own fault. So, instead, you have chronic fatigue syndrome.

Maybe your two-year-old is really active. He climbs up everything. He’s loud and noisy and eager and excitable. You find this annoying. But you can’t tell anyone that you find your own kid annoying or that you are too impatient to be a good parent, so, instead, you say that he has attention deficit disorder and pop some drugs into him to slow him down.  Sure, it takes away some of his energy and curiosity, but, hey, you have to get your sleep.

The diagnosis, in our society, is essential. We need that label. We need an identifier. We have to generate public belief in and enthusiasm for conditions that might be nebulous, vague, or invisible.

Why?

Well, almost every time you hear the diagnostic label being propounded, it’s by someone who makes his or her living treating it. This is why the bible of psychotherapy, the DSM III or IV or V or whatever it’s at now, always gets bigger and bigger. It never shrinks. They almost never remove “syndromes” from it. (It caused a bit of nudging and winking when they did finally remove homosexuality from their list of morbidities not all that long ago.)

And that’s why pharmaceutical companies are determined to get your kid into their slimy clutches. They are promoting the idea that a four-year-old who wont go to bed nicely when asked has some kind of mental disorder and needs to be drugged. Once your kid is used to those colorful little pills twelve times a day, they know he’ll never, ever again feel that he can handle life without some kind of narcotic assistance.  His “baseline” is obliterated.  Whatever he feels from now on will be partly due to the drugs and partly due to withdrawal from the drugs.  The perfecta of pharmaceutical self-sufficiency.

The magic of the diagnosis is clear. Some people will deny that feeling tired or frustrated or depressed is an illness. Some people might think its just part of life. You put up with it. You endure it, and get on with the things you have to do.

But it’s easy to convince people otherwise. If you have the proper label for something, people will assume that adequate research and scientific analysis has determined that this condition really exists. We trust doctors. They’ll assume that a doctor made the diagnosis, and everyone knows how smart doctors are. They’ll assume that everyone thinks it is a real condition because it has become part of the language. It becomes shorthand, to a lot of people, for complexities that are too hard to explain quickly.

When I was a lot younger, if I heard someone say something like, “he has attention deficit disorder”, I would just assume that there was such a thing as “attention deficit disorder”, and therefore we better do something about it. Now I’m a lot more skeptical, but I can remember how easy it was to accept sophisticated-sounding terms like that as if they referred to clear, objective realities.

When you look at the “symptoms” of chronic fatigue syndrome, you realize how utterly subjective and arbitrary labels can be. Tiredness. Depression. Loss of appetite. Headaches. Difficult to get up in the morning. And so on. Sounds like just about anyone’s rotten little life. Label it, and we can blame someone or something else. Label it, and we can talk multi-million dollar lawsuits. Label it and we can make a drug that fixes it. Then we are not “doing drugs”. We are doing “therapy”. We are taking the “wonder drugs”, Lithium and Prozac and Paxil, and whatever. It’s okay– we have to take these drugs: we have a condition.

The drugs, of course, don’t really fix anything. They give you a sustained high. It is one of the great myths of our society that drugs like Lithium and Prozac actually treat real conditions. That is utter nonsense. They simply make you feel good. But we have to believe in the myth, or else we would have to admit that we’re really not much better than your average drug addict or alcoholic.

Well, we’re not.

I heard some parents on the radio recently (the CBC) talking about their “hyper-active” child. The parents of this child were at their wits end. They didn’t know what to do. They went to the doctor. He prescribed Ritalin. They tried it. It worked! Hallelujah. However, their child just didn’t seem to be herself anymore. She lost her sense of insatiable curiosity. She lost her spark, her zest for life. They took her off Ritalin and tried different parenting techniques instead. From the details the father gave on the air, it was clear that he and his wife simply got better at parenting. They learned to anticipate when problems might occur. They planned ahead for family outings. They became more flexible and adaptable. Amazingly, the problems seemed to go away.

Was their child ever really “hyper-active”? If you read the definition of hyper-activity from the DSM, it is an amazingly accurate description of just about any two-year-old.

Beware of labels.

Update 2022-04-26

And I will concede that this will not a popular post.  I am regularly astounded at how many people I know are taking psychotropic drugs, and obviously I am very skeptical of their use.  I am wary of hurting people’s feelings.  But there is good reason to voice my dissent no matter how small a minority I represent.  We in danger, as a society, of building a world in which we continually anesthetize ourselves against our deepest anxieties.  We have good reason to be anxious: we are melting the ice caps.  We are promoting intolerance and bigotry.  We are more divided than ever before.  We should be anxious and the worst solution is to address our anxiety with palliatives.