Psychosomatic illness 4: Why denial?

What does it look like (and feel like) when someone refuses to accept a diagnosis of psychosomatic illness?

Often, the person denies the possibility of psychosomatic illness, not just because they want to avoid lowering their status, but because they are consciously not aware of any of the stress or trauma that outside observers can identify in their lives. Psychosomatic symptoms are themselves evidence of denial.

Last year I got sick right after graduating from law school; another illness hit me a few weeks later, after my first triathlon. The second illness was pretty bad, and I had no choice but to spend weeks resting, physically and mentally, something I hardly ever do. No more studying or eating or going to the gym or leaving the house; even a visit to the art museum exhausted me. My husband suggested that law school, the triathlon, and studying for the bar might have stressed me out. Ridiculous, I said. Sure, *other* people might find those things difficult, but not me. Look at the statistics. What do I have to worry about?

This is common. When a person denies the possibility of psychosomatic illness, it may be because they fear lowering their status, but it may be because they are consciously not aware of any of the stress or trauma that outside observers can identify in their lives. Psychosomatic symptoms are themselves evidence of denial.

[Patients say] “I had the most wonderful life until I fell ill. I hardly ever had a reason to feel stress.” And I think, how could that be? I have not had a day in my life with no stress at all. In the absolute rejection of stress in these sufferers is there something for us to learn? Ask somebody with dissociative seizures how they feel, and you may get the answer “tired” or “cold”--neither answer containing anything of their emotional state. Perhaps those who deny stress do so because they do not feel stress, having converted it to something else.

Psychosomatic illness 3

How can you tell if someone's suffering is psychogenic?

You can do tests and give the patient a list of normal test results. But tests are imperfect, and “when a person is paralyzed or blind or suffering from convulsions, it is not difficult to see why they find that a very unsatisfactory explanation.“

Very often you can't prove that a person's distress is psychosomatic, especially with vague symptoms like fatigue, pain and weakness. This is one reason why symptoms like these are often undertreated: I thought for years that my daily headaches were the result of the stress I was under, and so did everyone else; turns out I just needed glasses.

There are some facts that tend to suggest that an illness is psychosomatic, however. You can figure out whether the patient is under unusual stress, and if so, whether she is able to consciously acknowledge it. You can look at the patient's history of mental illness or other unexplained symptoms. This is of course a controversial and inaccurate technique; a person's past mental illness doesn't make it impossible for them to later develop physical illness, and what it can seem like to the patient is “you think I'm lying because I had a mental illness”---the standard experience for people labeled mentally ill.

Another technique is to look at the nature of the symptoms--is the symptom consistent with anatomical and biological facts? What treatments does the symptom respond to? O'Sullivan is lucky in that neurological symptoms can be assessed more easily than most.

Conversion disorders are usually a poor mimic of neurological disease. Symptoms that arise through stress or anxiety are produced in the mind and are dependent on what the sufferer understands about the body and disease. The subconscious mind reproduces symptoms that make sense to the individual's understanding of how a disease behaves. In the absence of detailed knowledge of the body, disabilities that arise in the subconscious rarely obey anatomical rules. Aspects of the examination can be assessed objectively, without the participation of the patient.

So, for example, one patient, worrying about a harmless lump on the right side of her head, developed numbness all done the right side of her body. Because she didn't know that the right brain controls the left side of the body, her subconscious had imagined her symptoms wrong.

Another person was unable to straighten his leg when sitting on the exam table. But he was able to use the same quad muscle to stand up from a chair without using his hands, establishing that the muscle weakness was not physically caused.

A third patient was given an injection of botulinum to treat a painful muscle spasm which had incapacitated her hand. Immediately, she reported she was cured--even though the botulinum only takes effect days later.

In the case of psychosomatic seizures—horrifingly common—the cause of the symptoms can be assessed through monitoring the patient's brain waves 24/7 until the person has a seizure. Normal brain function while a seizure is going on rules out epilepsy.

None of these techniques, however, will convince a patient who is firmly in denial. If I don't have epilepsy, maybe I have some previously unknown seizure disorder. Or my subconscious might come up with a new set of symptoms as soon as the previous symptoms have been found psychogenic. And there's always that old standby, “Medical science doesn't know everything, does it?” Even an experienced and tactful doctor like O'Sullivan finds a number of patients walk away, refusing to accept the diagnosis.

Psychosomatic illness 2b

These psychosomatic illness posts are inspired by a recent book by Suzanne O'Sullivan. I've been waiting for this book for a year, and it was worth the wait. The author, a British neurologist, writes about her experiences with the significant minority of her patients who show up with neurological symptoms, such as seizures, paralysis, or numbness, that turn out to be psychogenic. As a neurologist, she has an impressive array of tools that allow her to rule out organic illness, and as an NHS doctor, she seems to be freer to tell patients the truth and to deny them the tests they ask for than the average U.S. doctor.

Psychosomatic illness is treatable—in fact, “if addressed early enough, many of the manifestations of psychosomatic disorders spontaneously disappear without treatment.” But it's hard to treat--first, because the doctor must consider the possibility of psychosomatic illness, and second, because the patient must accept it. The media's narrative about illness doesn't help. When you read about medically unexplained symptoms, the story is: patient suffers, callous doctors can't help, until finally she finds the one doctor who knows what's going on. Doctors' suggestions that the problem may be psychosomatic are treated as insults directed against the patient. (Examples of this kind of narrative can be found at http://wapo.st/2qxCMm2 and http://bit.ly/2pkcswZ).

A patient in the latter article describes how she resisted suggestions of a psychosomatic illness: “When I found out there was an actual physical thing wrong, it was such a relief, because it meant I wasn't just a hypochondriac or a sissy—it was real." She's happy that she has a physical illness, because having a psychosomatic illness would mean being weak and ridiculous. Because she doesn't want to think of herself as weak or ridiculous, she must have a physical illness. She must reject suggestions of psychosomatic illness and go on doctor-shopping until she gets a diagnosis of physical illness. Of course, it's true that doctors are not perfect diagnosticians, and getting a second or third opinion may be a good idea. But we should consider the possibility of a psychosomatic illness as fairly as we consider the possibility of a physical one. In fact, according to the author, it's more common for a psychosomatic illness to be misdiagnosed as physical than the reverse.

And this harms patients. “The more completely somebody has denied the psychiatric diagnosis and imagined a particular physical paradigm to explain an illness, the more prolonged that illness becomes.”

"The harm that comes from incorrectly labeling a psychosomatic illness as organic, while often underestimated, can be immeasurable. If somebody has been told they have epilepsy and has been allowed to believe that they have a serious, potentially life-threatening brain disease, then this belief alone may be so enmeshed in their mind that it affects their ability to recover...It might lead to toxic unnecessary treatment. It might lead a person to make unnecessary life changes to accommodate the disease. But most importantly, the wrong diagnosis will deny the person the correct treatment. When illness functions as a crutch, it may be difficult to relinquish and something is required to take its place. I have told two patients that they had psychogenic seizures and have come back to the ward a day later to find them sporting crutches. Both patients' seizures went into full remission, but neither could walk unaided for several weeks."

The author is full of compassion and useful advice for how to discuss this subject with patients. "The exact manner in which the diagnosis of a psychosomatic condition is delivered is of pivotal importance. Seizures will often disappear completely immediately after the diagnosis has been given--if it has been given well, that is." Hearing that "The tests are normal. There's nothing wrong with you. Go home" is only going to alienate patients without helping them. Psychogenic illness is something wrong, and something that desperately needs to be treated.

Psychosomatic illness 2

What is psychosomatic illness? Here we arrive at a difficulty, because as soon as I start telling you that X Syndrome is psychosomatic, commenters will jump in to tell me that they know X Syndrome isn't psychosomatic, because their friend had it and she was really suffering and how dare I call her a liar?

This is a stupid objection, but I'm not going to get around to explaining why till later. So, for now, let's focus on less controversial examples of psychosomatic symptoms. In the author's words, “physical manifestations of unhappiness are something we all experience; they are not personality flaws or signs of weakness, they are a part of life.” If you know what it's like to cry, or blush, or tremble, or hyperventilate as a result of emotion, these are all examples of how emotions cause physical changes.

Recall the last time you felt psychosomatic symptoms. Notice that you have a very limited degree of control over these symptoms; even if crying or trembling is very embarrassing for you, you can't make the physical manifestation of an emotion go away any more easily than you can make the emotion go away. This ought not to be news to anyone who feels feelings, but it refutes one common objection to the concept of psychosomatic illness, which is along the lines of "My cousin has chronic fatigue syndrome. I've seen her, and she really suffers! She had to drop out of school and give up her favorite hobby! How can you say she's making it up? Why would she do that to herself?"

Psychosomatic illness indeed causes people pain, and sufferers are not lying or consciously making themselves suffer. It's not a pretend illness; it's an illness. As to why a person would do that to themselves, well, read Freud. Or think back to times when you've wanted to punch a wall, or start an argument, or drink till you pass out, or run till you collapse. Our psyches choose one kind of suffering to avoid another. I rate this objection: Completely Wrong.

Psychosomatic illness 1

Psychosomatic illness is one of the greatest causes of suffering in our society--one that is stigmatized, understudied, underdiagnosed, and undertreated when it is diagnosed. If you've never had a psychosomatic illness yourself, you likely know someone who has. On an average day perhaps as many as a third of people who go to see their general practitioner have symptoms that are deemed medically unexplained (quotes are in italics). For most of us, these symptoms are fairly mild: headache, upset stomach, fatigue. For some, the symptoms become crippling and cinematic: paralysis, seizures, inability to talk, loss of memory.

Almost any symptom we can imagine can become real when we are in distress--tremor, fatigue, speech impairments, numbness. Anything. Almost any function of the body can be affected in almost any way. One day a woman loses speech entirely and the next day she speaks in the voice of a child. A girl feels a lump in her throat and becomes convinced she cannot swallow. Eyes close involuntarily and no amount of coaxing or prising will open them. A boy repeatedly drops the ground; every time he stands, he falls. History has seen every one of these things described. [From a 1764 author]: The colours of the chameleon are not more numerous and inconstant than the varieties of the hypochondriac and hysteric disease.

And yet, many observers as well as sufferers reject the concept of psychogenic illness. I hope that this series of posts will elucidate what psychosomatic is, refute some common objections to the post, and give you an idea of when you should consider the possibility that you have it.

Packingham and censorship of sex offenders

Let's talk about Packingham v. North Carolina. May states constitutionally ban convicted sex offenders from using social media? Some points that came up:

• Social media is an important part of modern life. The President uses Twitter to convey breaking news--this law would ban sex offenders from reading the President's Twitter feed. Isn't that excluding sex offenders from fully participating in our polity as informed citizens? Who's going to tell Packingham about the latest dead celebrity?
• On the other hand, there's a lot of precedent for denying people rights after they have been duly convicted of crimes. Going to prison means losing many rights. Not only that, after release you may face indefinite or lifetime loss of certain rights, like the right to vote or right to bear arms. You can lose the latter after only a misdemeanor conviction or even a restraining order! So if we don't sympathize with the guy who slaps his girlfriend and permanently loses his Second Amendment rights, why should we sympathize with the sex offender who loses access to Facebook?
• It's legally irrelevant, but since I brought up sympathy, let's have a moment of sympathy for the "sex offender" in this case, who was put on the registry after having sex with a 13-year-old when he was 21, fifteen years ago. A bad decision, but not bad enough to justify being on a sex offender registry.
• A big reason why Packingham won (spoiler) was the overbreadth of the law. It banned "gaining access to" social-networking sites that allow minors, no matter what you do on those sites, even if you have zero contact with minors, and even if you never post any comment. (Packingham got in trouble after a Facebook post in which he attributed getting out of a couple of traffic tickets to being specially favored by Jesus. I'm no theologian, but I would think once you're a registered sex offender you'd give up on the idea of being favored by God.)
• The law also categorized any site as a "social-networking site" if it allows users to comment and does not ban under-18 users. So not just what you or I would think of as social-networking sites, but most news sites, blogs, job sites, and many commercial sites like Amazon that allow user reviews.
• So a law meant to prevent sex predators from seducing children online ends up banning people from buying shoes on Zappos, looking for apartments on Craigslist, or reading WashingtonPost.com. If the person who wrote the law had drafted more cautiously, this law would have survived as a narrowly tailored "don't contact strange kids online" rule. Why don't people hire me to write these laws? As it is, the law was struck down as an unconstitutional restriction on speech.  

Don't use the courts to force people to like you

Social approval! We all want it. And we're never going to get it--at least, not as much as we want. Whether the people around you approve of you is not within your control. Well, some of it is--you can take some voluntary actions to improve your chances of approval. Being nice and tipping and taking showers helps. But that will never guarantee you get the approval you want.

Why not? Part of it is pure luck--or “privilege,” grudgingly. Part of it is the “you can't please everyone” effect. Being upper-class is generally good, but not if you want to fit in in a lower-class environment. Some people resent immigrants; others think Americans are dumb. Some people will hate you for being black, and others for being white. You can be fat-shamed or skinny-shamed. So, fundamentally, we have to live in a world in which, no matter who you are, some people will hate you for no good reason. A woman has to navigate a world with misogynists and rapists in it. An atheist has to accept that many people think he's going to burn in hell. And gay people have to live with the knowledge that many of their neighbors disapprove of their sexual and romantic relationships. For the person who finds these facts upsetting, I recommend Agent Cooper's mantra.

FBI Agent Roger Hardy: They're liable to extradite you for murder and drug trafficking.

Special Agent Dale Cooper: These are things I cannot control.

This is my problem with the current gay rights movement. As a libertine and libertarian, I have of course been strongly in favor of gay rights as long as I can remember. When gay marriage was banned, and, earlier, when gay sex was illegal, there was a crying need to fight so that gay people can get what they deserve.

But now? Every time I read about a new gay rights case, it's, well, bullying. Suing the small business owner who refuses to sell flowers or cake or custom-printed T-shirts for gay weddings or gay causes. These are not cases about getting gay people what they deserve-- the same privileges and rights the rest of us enjoy. This is using the courts to force the illusion of social approval.

Not even the plaintiffs claim that any person has actually been damaged in these cases. One litigant in a right-to-wedding-flowers case claimed that his actual damages were some $17, or the cost of the gas he burned when he had to drive to a different florist. In another case involving a transgender high school student, the biologically male student wanted to use the girls' locker room; the school wanted him to use the boys' room, and offered the obvious compromise; a private changing room for this student. The offer was rejected--proving, beyond a doubt, that the transgender bathroom controversy is not about providing safe and decent bathroom facilities for transgender people. It's about forcing society to accept the transgender theory of gender. This is completely wrong. Partly, of course, I think it's wrong because my concept of gender is different. But it would be wrong to use the courts to force people to accept my gender theory too! I just have to live in a world in which most people are terribly, terribly, wrong, and, rather than being something the courts ought to correct, this seems like the human condition.

Litigating for social approval is not what the courts are there for. Social approval is not something gay or transgender people deserve, because desserts don't make sense in this context, because social approval is inherently arbitrary.

I wonder if the gay rights advocates agree with me on this point. Is it that they think of approval as something that you are entitled to, if you do x and y? In my life, I've gone from being one of the most stigmatized, powerless and low-status people in our society, to now being reasonably successful and respected. From having to ask dumb people for permission to go to the bathroom to having a job that largely consists of telling smart people what to do. And yet, I feel like the same person. It creates some cognitive dissonance that I've never really known how to communicate. But, other people have not had this experience. If you've always had people approve of you if you did the “right” thing, I imagine you might come to think of approval as something you “deserve.”

Another possibility is that gay rights advocates think of these cases not as means of redressing specific wrongs done to the plaintiffs, but rather as a means of shifting popular opinion. So it's not about fighting for what someone deserves, but rather conducting something of a morality play in which the state of the law is merely a public relations tool.

I would be interested in hearing your opinion, especially if you agree with these gay rights cases. Do you think social approval is something that people deserve? Or do you think these cases are a PR tool? Or do you think our disagreement resides somewhere else?