Friday, December 27, 2013

Horror Stories in the Public Domain: Often More to the Story

The Nocebo Effect

Since I started this blog, I have corresponded or interacted with several respectful, thoughtful, and caring (as well as some hateful, ignorant, and not so well-meaning) individuals who run websites that are critical of psychiatrists or psychiatric medication, or who run support groups for the parents of individuals with various psychiatric diagnoses. These folks collect and publish horror stories. Some of their readers report having had bad reactions to psychiatric drugs and/or awful interactions with mental health professionals, while others discuss interactions with relatives with specific psychiatric or psychological disorders.  

As to the psychiatry critics' drug websites: Of course, anyone who reads this blog knows that I believe that there are a lot of really bad psychiatrists out there who end up doing real harm to their patients. Mostly, they drug patients unnecessarily or over-medicate them, and do not recommend  - and therefore deprive patients of - psychotherapy or family therapy that might do their patients some real good. Others do not monitor patients for adverse reactions, with sometimes catastrophic results. These websites can often contain information that can be very helpful to such individuals.

It is also quite true that a small proportion of those taking any drug on the market, psychiatric or otherwise, can have bad reactions or bad withdrawal symptoms, and that certain drugs are of such high risk for potential toxicity that they should not be prescribed for anything but the most serious of reasons. Toxicity from drugs that for many people are truely helpful and indicated can be monitored for, of course, but often doctors do not do this, as mentioned above.

While a majority of the horror stories about drugs are therefore probably true, although unrepresentative for reasons about to be discussed, this does not necessarily mean that any story website readers submit about a bad reaction that they seem to have had to a drug is, in fact, due to the drug. That should go without saying.

First, there is what is called a nocebo reaction, which is sort of like a placebo reaction in reverse. People will develop symptoms that are not actually due to the drug itself because of their expectations about the drug - just like people can have a bad or good reaction to a sugar pill that is basically inactive, pharmacologically speaking. The popularity of the obviously bogus science of homeopathy, in which individuals are given what is basically water, attests to the power of placebos and nocebos.

It is ironic how some of the more strident anti-psychiatry folks go on and on about high placebo response rates in drug studies, yet systematically deny that anyone ever has a nocebo response. This lack of consistency is always an excellent clue that anything such a person says may be highly prejudiced, and that their reading of evidence is highly selective.

Of course, people who have good responses to drugs are not going to write into the sites designed for people who have a complaint. In a similar vein, parents who were severely abusive to their offspring are not going to write to parent support groups for the families of patients with alleged psychiatric “diseases.”  Therefore, both the leaders of parent support groups and drug site webmasters are hearing from a highly select sample of individuals who are probably not at all representative of the majority of people who are involved.  

Parents who contact the two support groups for the parents of patients with borderline personality disorder (BPD),  NEA-BPD and TARA, are an excellent example of an unrepresentative sample. Yet the leaders of these groups often deny or minimize the role child abuse and general family dysfunction play in the genesis of BPD because of their tendency to overgeneralize from their readers, despite the FACT that every study ever done shows that these factors are highly prevalent in families that produce children who grow up to have BPD.

As to the people who do seek help from support groups for relatives of people with various disorders: At least some if not most of these individuals have a strong need to blame their interpersonal problems solely on a mental illness that their relatives supposedly have. If that were the case, they would not have to feel guilty about their role in the family member’s problems. I discussed this phenomenon a long time ago in a post about a website supporting the parents of children who supposedly had bipolar disorder but were in actuality just plain ol' acting out. The post showed how Pharma, with the cooperation of corrupt psychiatrists, took advantage of these parents to sell inappropriate drugs for their kids.

Similarly, complainers about drugs may actually be miserable because of family problems, but would rather blame their misery on the drug rather than face the facts of their family dysfunction. This is the defense mechanism called displacement

Again, of course there are real psychiatric diseases like schizophrenia and real manic depressive illness, but as readers of my blog know, I believe that what are just behavior and interpersonal problems are frequently mislabeled as "diseases" by both mental health providers and the general public alike, such as ADHD, bipolar (my ass) disorder, and even borderline personality disorder. 

The webmasters for the sites under discussion here, and the leaders of these support groups, tend to just accept the pronouncements of their “customers” as true and complete and do not question them. Blindly taking the word of people who may have several skeletons in their family closets is probably not wise. These are people the webmasters usually do not know at all, although in some cases they may have corresponded more extensively, and there is rarely any way to verify what they say. Therefore, it seems to me that one can easily be misled about both the prevalence and/or the basic nature of these problems from reading these websites.

The same question of whether one is getting the whole story might also be said about letters to newspaper advice columnists. Admittedly, I have been guilty of using such letters to illustrate various points I make on this blog. Some letters to Dear Abby and her colleagues may be completely fraudulent, and they can easily be fooled into publishing a fake one.  

An even bigger problem is that, even when a letter writer is completely sincere, many times he or she is only telling part of a much bigger story. Patients, letter writers, and website visitors can be completely truthful in what they say, but leave out highly relevant facts that would change the opinion of anyone listening to them.

As a therapist, and as I have mentioned in previous posts, sometimes the truth about what is really transpiring with a patient, particularly during their interactions with family members, are not revealed until literally months or even years into ongoing psychotherapy. Family skeletons tend to remain family skeletons for a reason.

A great example of someone leaving out a lot of relevant details, if true, was seen in a couple of letters to the advice column Annie’s Mailbox. A daughter-in-law was accused by a letter writer of what sounded like some pretty rude and unpleasant behavior, and the Annies were sympathetic in their answer to the writer. Then the daughter-in-law herself wrote in with her side of the story. Although I cannot be certain that the letter writers were not making this stuff up, I reproduce the letters because I have seen real examples of patients “spinning” facts to make themselves look better than they are, or in many cases, to make themselves look worse than they are.

These letters do illustrate some of the ways that facts can indeed be “spun” in such a way that a reader or listener is completely misled.

Letter #1: Aug 5, 2013. Dear Annie: My husband and I drove a long distance from our home to help our son and his wife with their move from another state. They have two infant daughters, and we wanted to help in whatever way we could. The first morning, Dad went with our son to the bank, leaving me at the house with the movers. My daughter-in-law stayed in her bedroom with the babies. The movers' questions were directed to me, and my daughter-in-law didn't come out of the bedroom until my son came home. It was hard to believe she wouldn't want to be involved in the decision-making process about where her furniture should go. 

On the fourth day, our son went back to work, and we were left to fend for ourselves in the morning while his wife slept in. There wasn't even a TV to keep us occupied while we waited for her to get up. At 11 a.m., we decided it was time to leave, and we cut our stay short. We called our son on the way back home and explained the situation. In seven months of our son saying everything was "fine," they never initiated any contact. There were no acknowledgements of Christmas and birthday gifts, much less a thank you. There were no phone calls. Now his wife is demanding an apology from us, saying we were rude to leave so abruptly. We believe this was inappropriate behavior on her part. What is your opinion? -- Disappointed Parents

Dear Parents: We think you will have ongoing problems with your daughter-in-law. She was rude and ungracious. But she is your son's wife, and he is disinclined to stand up to her. You will have to work through her if you wish to maintain a relationship with your son and grandchildren. Apologize, even if it sticks in your throat. If she avoids you by staying in the bedroom, don't make it a problem. Learn to keep your negative opinions to yourself. Remain upbeat and positive. Always be nice to her. Remember, you can catch more flies with honey than vinegar.
Letter #2: 10/18/13.  Dear Annie: I am the daughter-in-law mentioned in the letter from "Disappointed Parents," who said I retreated to the bedroom while my mother-in-law handled the movers. From their letter, I can understand why you think I might be a problem. Yes, they did travel a long distance to help us with our move, and it was greatly appreciated. I kept thanking them and continuously asked whether they were OK and whether they needed anything. I was told over and over that they were just fine. The day the movers arrived, my husband and I agreed that he would deal with them and I would keep our small children out of the way in our bedroom. He didn't tell me that he and his father left to go to the bank, leaving his stepmother to handle the movers. 

My husband and I both slept until noon that day, but they only castigated me for being "lazy." They didn't mention that I was up until 4 a.m. unpacking. They were bothered that I didn't have breakfast ready for them, even though the kitchen wasn't unpacked. They expected to be entertained. When they decided to leave in a huff, I was bathing our kids. They didn't even lock the front door behind them. After they left, I received nasty emails saying how rude I was and that I need to apologize. Each one included a laundry list of the ways I am a terrible daughter-in-law and don't know my place. I didn't send birthday and Christmas greetings because my husband said he wasn't interested in doing so. His father has a history of anger issues and has alienated every other family member. My last email stated that I was cutting off contact. I am too busy raising my children to raise my in-laws. They smile to your face while making lists of slights behind your back. I don't want my kids around such behavior. Thank you for reading my side of the events. — Shell-Shocked Daughter-in-Law

Dear Shell-Shocked: Thanks for providing it. Many readers came to your defense, saying that a new mother who had just moved had her hands full and deserved more consideration. We agree.

Often the possibility that details are being left out of a description of an interpersonal problem can be suspected from a very careful reading or listening to what is said. For example, I see a lot of letters to advice columnists by elderly parents complaining that their adult children are ignoring them or are angry at them, seemingly for no apparent reason. In point of fact, there is always a reason. For example:

Dear Annie: I could have written the letter from "Hurt in Florida," whose children and grandchildren don't include her in their get-togethers. My daughter told me they are "just too busy" for me. But they somehow have time for her dad and stepmother, as well as her in-laws and several friends. I haven't seen them in more than a year. We don't talk because I don't call. I don't understand any of it. I just wanted to let "Florida" know that she's not alone. I'm hurting with her. — Midwest Grandma
The key question raised by what is said in this letter is why said daughter seems to love to get together with every family member except the letter writer. Could it be that the writer has distanced her child in some way? You can almost bet on it.


  1. Another really insightful, intelligent post. Please keep up the great work you do on this blog. And a Happy New Year to you!

  2. You say that people with positive experience with drugs aren't going to be as compelled to share their experiences as those with negative experiences. How does this apply to those who write into advice columns or other forms of public/group support? Are there types of people - or roles - who are more and less likely to seek public validation? Would you say that those who seek out public validation (mother-in-law) tend to tell less complete stories than those who do not (daughter-in-law)?

    1. Hi Anonymous,

      An excellent question, but I do not know the answer. I suspect it varies widely with individual cases, so that one would not be able to make any generalizations one way or the other.

      As to the drugs, people with positive experiences may be just as compelled to share their experiences as those with negative experiences - they just are not going to do that on websites devoted to people who have had bad reactions.

  3. Yeah guess I was always taught, there are two sides to every story. Of course nothing beat's public lynching, course we don't hang them for real these day's...

  4. I do frequent a bipolar website here in France, but as you say it is definanteley biased towards the people in crisis, and very heavily pushes cbt therapy, the only way apparentely. It was good in the begining when i needed to feel less alone, understood like only another bi-polar can "understand" right?! Bah just like with ex-alcoholic friends it all becomes "us" and "them" and no responsibility its the disease, ex alcoholics are terrible for that.

  5. Great post, it seems so often that only one side of stories get heard (usually the one claiming to have been unfairly wronged).

    It seems analogous to Freud's era, when he devised his seduction theory rather than face the fact some of his patients' fathers (who were his colleagues and paid his fees) were molesting their daughters.

    P.S. I used to be one of those people that hated psych meds in part because I *expected* nasty side effects (I think).

  6. I have a question for you, Dr Allen...First, I must explain that I have Borderline Personality a Disorder and I am in a good place in dealing with it. Since I have this disorder, I do a lot of researching on it and have come to this conclusion: what many people call "Autism" is really the criteria for Borderline Personality Disorder. Many people are so offended when I tell them that...what are your thoughts on this? If you already discussed this, can you point me to the post about it? I haven't really found any differences between Borderline Personality Disorder and what people are calling "Autism". I believe it is the same disorder, but one is ok and the other is stigmatized....

    1. Hi Ms. Church,

      Interesting question. I must admit I never thought BPD was at all similar to autism. I'd be curious to know what you think the commonalities are.

      (I find that my patients with BPD are actually extremely good at reading social cues rather than defective at it).

  7. Well, it is not so much the social cues, it is the other things: suicidality, meltdowns/tantrums, stormy relationships, mistrust, obsession, they both have neuro imaging changes with the prefrontal cortex, hippocampus, and amygdala...every time I think I have come across something that makes them different, I look it up and I find that people with both have whatever thing I thought was different. Also, DBT is starting to be used for was created for BPD. Going back to the social cues, how can a person really know whether someone understands social cues or not? That seems like that would be subjective. Can you do a blog post about the differences between Borderline Personality Disorder and Autism?

    1. Hi Ashley,

      I think that you have to look more deeply at how these manifest. For example, as one journal article shows, a patient saying they're "depressed, sad, or down" can have all sorts of meanings:

      "When a patient says “I feel depressed, sad, or down,” such statement may, if further explored, be found to indicate a bewildering variety of experiences with varying affinities to the concept of depression: not only depressed mood but also, for instance, irritation, anger, loss of meaning, varieties of fatigue, ambivalence, ruminations of different kinds, hyper-reflectivity, thought pressure, psychic anxiety, varieties of depersonalization, and even voices with negative content, and so forth."

      I can think of one you can kinda pick at right now: "obsession." This by itself is actually a very broad term and can manifest itself in a number of distinct ways, such as:

      *True obsessions: Intrusive thoughts that produce fear, worry, anxiety, etc. (characteristic of OCD).
      *Obsessive ruminations: Obsessive thinking about things that happened in the past. (Obsessive ruminations based on anger and sadness are common in BPD and depression.)
      *Restricted interests: Enjoyable, but intense and highly focused study and discussion of favorite subjects, the pursuit of which possibly leads to neglect of other areas and social problems (characteristic of autism spectrum disorder and not at all a feature of BPD).

      There are other varieties of obsessive behavior.

      This was an example of the nuances that occur in psychiatry. As the journal article I linked to states, "[T]he phenomena of consciousness, which, unlike somatic [bodily] symptoms and signs, cannot be grasped on the analogy with material thing-like objects." Basically, you can't just take individual psychiatric signs and symptoms out of the nueropsychiatric and environmental context in which they appear: This is where symptom checklists often go wrong.

      Only a mental health professional, getting a good understanding of the patient's mental states and history and using their clinical judgment, can really make these determinations of differential diagnosis, find their way through these subtle nuances, I say.

  8. Thanks for sharing this idea interesting blog, Please continue this great work.