The little things

Since Chris was released from his third hospitalization in May, 2009, Ian and I have been keeping a low profile around Chris. We made a conscious effort to practice low Expressed Emotion. This means for us, not asking Chris how his day was, not asking him about his night course or whether he thought he might be ready to tackle something big. We don’t ask, he doesn’t tell. In the past, our showing “friendly interest” can also be interpreted as “concern,” and this is high Expressed Emotion. We don’t ask his psychiatrist for meetings and we have given up trying to figure out if Chris is in his right mind. Ian and I don’t discuss Chris between us. We don’t comment to each other about whether Chris seems happy or sad, and we never discuss our future hopes and plans for Chris.

The result is that things are going along swimmingly. Chris has always had a tendency to be too honest and would tell you, if asked, all about his self-doubt and would share subtle things that made one despair he would ever pass his course. We don’t want to hear this (too nerve-wracking), and now we don’t.

Last night I was just about to turn in when Chris knocked at the bedroom door. He popped in to tell me how much he was enjoying his computer technician night course, and that it was a bit challenging because of the language difference, but all in all, he thought it was going well.

In the past, I might have gotten all enthused and interested and probed him a bit more and then launched into some ideas about where he could go with this course. Instead, all I said was, “that’s great. See you in the morning.”

This is something little that is also something big.

My own definition of Low Expressed Emotion

“Low Expressed Emotion is believing that your relative is not mentally ill.”

Belief that your relative is not mentally ill will guide your reaction to any situation involving your relative. Siding with your relative shortens the psychic distance between you, bolsters his or her confidence, and encourages healing.

After Her Brain Broke

After Her Brain Broke: Helping My Daughter Recover Her Sanity, by Susan Inman (introduction by Michael Kirby, Chair, National Mental Health Commission of Canada; with endorsements by E. Fuller Torrey, MD, Daniel Kalla, MD, Stephanie Engel, MD and others)

I ordered this book, not because I thought I would agree with it, but because there is actually another mother out there who has written about the mental health diagnosis of her child, which in this case is kickstarted by Paxil for some kind of depression/difficulties, thus raising bipolar, which then becomes schizoaffective, schizophrenia and OCD. With that many diagnoses, I would have lost my faith in psychiatry much earlier than I actually did. Susan Inman has not lost faith in psychiatry, only with the kind of psychiatry that doesn’t come with a prescription. If you are a person, like I am, who believes that schizophrenia is not a brain disease and that medications are ruinous in the long run, then this book is not for you. I am dismayed about how heavily the author relies on E. Fuller Torrey. Many people feel that the references cited in this book, including E. Fuller Torrey, Dr. Nancy Andreasen, and the National Alliance on Mental Illness (NAMI) have contributed to the rise in the overuse of antipsychotic medications today.

Mothers come in all shapes and sizes and political leanings. If there is one thing that the author and I might be able to agree on is the dismal state of psychiatry and how badly it has served both patients and families alike. Where we differ is in the details. It would come as no surprise to anyone since E. Fuller Torrey endorses this book, that Susan Inman fully subscribes to the broken brain theory of mental illness. The title strikes me as an homage to psychiatrist Dr. Nancy Andreasen’s book, The Broken Brain. Now even Dr. Andreasen has started to warn about the dangers of long term use of antipsychotic medication, something she helped promulgate. That’s no help to the people who have suffered under this regime, but hey, again, that’s how badly served people are by psychiatry. Susan Inman, despite the ten different medications her daughter has been on in about as many years, still clings to the idea that a better drug will be invented.

I can excuse that belief to some extent because the broken brain biochemistry model is what people have been told for decades by doctors they are supposed to trust, and families are desperate. However, my son and my family and others are the products of the NAMI/Torrey/Andreasen cabal that insists that medications are the only way to deal with schizophrenia. We suffer at the hands of doctors who refuse to consider that medications aren’t helping and are actually hurting people’s chances of real recovery. The doctors weren’t honest with us. They never clued us in that there are competing theories of mental illness, and that medication is not always the way to go. This is called “full disclosure” in other areas of endeavor. Neuroleptic medications are a bitch to withdraw from. Telling the doctors that weight gain, increased risk of diabetes, tardive dyskinesia and early death is unacceptable when there are other avenues out there falls on deaf ears.

I have a hard time with Susan Inman’s other main point (and Dr. Torrey’s): That the family background has nothing to do with a mental illness. She seems unwilling to even remotely entertain the idea that maybe there is something in the family environment beyond just a medical diagnosis of bipolar and epilepsy in distant relatives, that might have something to do with the rage and suspicion that her daughter spat back at her. She is upset with anybody who seems to even hint at this. Like it or not, most people labeled mentally ill, I have found, do believe it is their family that contributed to their breakdown. (People don’t listen to mental patients’ actual complaints.) No, the problem is with her daughter’s biochemistry, she asserts. The family is not dysfunctional, her daughter is mentally ill. She bristles at the suggestion of Expressed Emotion, as one of the doctors in a family education class spoke about. She reasons that she and her husband have been very careful not to criticize their daughter. The problem with Expressed Emotion, in my opinion, is that it is a concept that nobody has bothered to properly explain and therefore nobody really knows what it is about. It is a concept that I believe is valid, and is much larger than the family criticizing (or not) their relative. It is also the emotion around being told that you are mentally ill and that you must accept your sickness. Organizations like NAMI do this very well. What it tells the suffering individual is that there is something wrong with them. How can someone get well if they are constantly told they are sick and that they must accept that they are sick or they won’t get well? That is like a school teacher telling a child that they are stupid, but if they want to do well, they must first admit their stupidity. This approach is discouraged in every other area except mental health, apparently. Pity is also Expressed Emotion. So are medications (feeling singled out trauma associated with being fat, drooling, unable to drink alcohol when everybody else can, etc.). Expressed Emotion can be delivered by doctors and society. (Schizophrenia is the Diagnosis of Doom.) I had to find out about Expressed Emotion for myself. It is not mentioned much these days for exactly for the reason that Susan Inman found objectionable. She writes: “Fuller Torrey sees a lot of this work as just one of many efforts to find new ways to blame families.” Really? If anything, I think that family background has been unexamined for decades for fear of offending people.

I’m a mother, too, and I may not be wild about people hinting that maybe I should take a look at myself, but what I cannot understand is someone who isn’t intellectually curious and fearless enough to be willing to investigate the possibility if it could result in breakthroughs for her daughter. Yes, there are good therapies that address this (even for schizophrenia!), but that would mean, of course, that they might tread into family background. Susan Inman refuses to go down that path. She paints an idyllic but sketchy portrait of family life. How many of us are that fine and noble as parents? I am ashamed of things I have said and done in moments of anger when my children were small. My son’s childhood was normal enough, but mental illness is a lot more nuanced that what is on the surface. People on the outside looking in might think that ours was a normal family, and it was, but it isn’t really. No family is normal. None. What is so hard about that?

Susan Inman has such fears about anything less than a perfect family for her children that I fear she has not stretched herself enough to be honest with her daughter or herself. A holistic person would feel that the person with the label is on to something, even if not understanding the root of it. Psychiatry has been too busy with the prescription pad in the second half of the last century to build on the base established by Freud, Jung and others in the first half. Freud appears to be utter rubbish to her. She has bought the medical model. She routinely dismisses the idea that there is another side to this. When a member of the Vancouver Playwrights’ Theatre Centre writes a letter objecting to the terms of the guidelines of the conference the author is sponsoring, saying that there is no evidence that schizophrenia is a neurobiological disorder, she portrays the basis for his opinion as mental illness being invented by psychiatry and pharmaceutical companies to make money. Full stop. No acknowledging that this is a widely held opinion by many thoughtful people. Most people have no opinion about schizophrenia unless they have an intimate involvement with it, as I would assume the letter writer has. She sees his complaint as romanticizing mental illness. This is what she calls an anti-science approach, which makes me sad because science hasn’t been especially good to her daughter or my son. When her daughter manages to enroll in a sociology class, she discovers to her horror that the teacher tells the class that pharmaceutical companies in cahoots with psychiatrists have made up a bunch of mental disorders for which there is no evidence. Well, isn’t a first year college course (especially sociology) exactly the kind of place that should challenge your closely held assumptions? Not when it comes to mental illness, I guess.

To Susan Inman’s credit, she is tenacious, but in a completely opposite way than I would go. She’s got involved with NAMI to fight the stigma. I said NAMI perpetuates stigma. Stigma will remain as long as people are not getting better. “Science” has enabled people to remain mentally ill and now it wants mental illness to be accepted by removing the goal posts. NAMI is an organization that encourages relatives to continue to medicate their relatives, thus putting real recovery even further out of reach. U.S. Congressional investigators have determined that, in recent years, the majority of NAMI’s donations have come from drug makers. The disclosure came about after longstanding criticism of NAMI for coordinating its lobbying efforts with drug makers and pushing legislation that also benefits the pharmaceutical industry.

To illustrate what a colossal train wreck the biochemical model of mental illness is, it is interesting to see how dosage is viewed in different countries. Of course, recommended doses are changing yet again, so what Susan Inman and I were told a few years ago is not what we would be told today, but here is her experience. She goes to the Menninger Clinic in the United States and is told that the level of meds her daughter was on in Canada was not high enough. Doctors in the United States administer much higher doses of antipsychotics early in the treatment because they have found it more effective in stamping out psychosis. This causes her to worry, naturally, that it is too late for her daughter. In Europe where we live, the doctors told me that in North America the doses are too high and that in Europe they have found that minimal doses work best. I am not thrilled with the European logic, either, because what is actually considered a low dose? If someone passed me an antipsychotic and urged me to try one, even at a low dose, I would decline. I don’t think I would function very well.

Kudos to Susan Inman for being a mother willing to write about a difficult subject. I have wrestled with the rating I want to give this book. It’s a gripping read. My hesitation is that when someone first is given The Diagnosis of Doom the doctor may suggest that you read E. Fuller Torrey, and now maybe they will include Susan Inman’s book. If you want to actually get over your diagnosis, you will have to look elsewhere. The web is full of self-help advice from people who’ve been there and emerged transformed. No praise to this book for perpetuating the NAMI biochemical “just take your meds and don’t even bring up the family environment” version of mental illness. Schizophrenia is not like any other illness. It has to be tackled with more imagination and respect than just administering drugs and telling your relative that it’s brain damage. Refusing to recognize the importance of the family background will guarantee the persistence of the purely pharmaceutical model and extended mental illness.

The expressed emotion of meds

Did I say we were done discussing Chris? I wonder from time to time if it would be all-round easier if I were married to myself. Ian and I had another disagreement last night over the meds, leaving me (and him) rather sleep deprived this morning. This particular area of disagreement wouldn’t arise if medical authorities hadn’t overreacted in the beginning, when Chris had his big crisis. By overreacting I mean piling on medications, then switching them when, surprise, surprise, he didn’t get better, then insisting that medications are the only way to handle the problem. How many doctors has he seen since? Chris’s recovery to date, while remarkable in many respects and a cause for real cheer, has been protracted I feel because of the narrow way his crisis is defined by mainstream medicine. The meds are always there, like the elephant in the room, casting a shadow over our day-to-day lives.

Ian and I see meds differently, not only for Chris, but in how willing we are to take them ourselves. For myself, I look for alternative (homeopathic, etc.) means as a way to avoid becoming prescription dependent. I worry about being 80 (I should live so long) and on a debilitating cocktail of drugs that have been building up over the years. I certainly don’t want Chris being drug dependent at his tender age, and I see no reason why he should be. Sure, he’s on the lowest dose possible of two meds, but he’s still on meds and I don’t see any movement afoot by his doctors to get him off them.

Ian is all for not second guessing the doctors about how they handle the meds, and I, well, I’m all for second guessing them. Case in point: Chris’s med handling psychiatrist (as opposed to his psychotherapist) has told Chris that if he is concerned about his weight gain, then Abilify is more of a problem in this regard than Serdolect. She has no doubt consulted the product sheets and if they say it’s so, by golly it must be so. All the companies now are trying to win the Best in Show award by boasting that their products don’t contribute to weight gain. So how come consumers continue to gain weight?

The weight gain is expressed emotion big time. The side effect of gaining weight is an unwanted further intrusion into an already difficult situation. In truth, Chris hasn’t gained much weight this time around, but it has still added several inches to his waist. Chris is always checking himself, berating himself for eating too much, and eating up a storm in the kitchen because he can’t control his appetite. This is not his fault. I know where the problem lies. I tell Chris that it’s not his fault, and not to beat himself up over it. It is a temporary situation, I tell him. The unsaid part is “temporary while you are on meds.” That is my expressed emotion on a subject that I don’t even care to entertain.

In other areas of the world where expressed emotion is supposedly lower, which also tend to be areas where there is not as much access to neuroleptics, the fall-out in expressed emotion from meds is at least one expressed emotion that is avoided. Ian and I have retreated once again to our “we won’t discuss it” policy. The rapprochement in this area will percolate along for a few months. We’ll see what will happen.

Pity not (and other things about Expressed Emotion)

If, as they say, high emotional expressiveness on the part of family members leads to more frequent relapse by the patient, it would be nice to know what is meant by this. From my own experience, I offer up the following.

It is not good to criticize. While this seems obvious, it is not always easy to carry off, especially when your relative is acting strange, doesn’t answer, stands in a corner or never smiles, to name just a few things that come to mind.

Criticism isn’t just verbal, it is actions and expressions. Keeping a poker face when you otherwise want to roll your eyes or grimace can be learned and rather quickly becomes easier.

Crying and other big displays of emotion in front of your relative also upsets them. Again, this is obvious, but often almost asking the impossible of the family on a daily basis, especially when the crisis first breaks.

I have been guilty of all of the above. There are five of us in our household and there is a lot of Expressed Emotion, although, being the only female member of our family, I am told it comes mainly from me. My sons and husband seem to think that when I think that I am not raising my voice, they hear me as actually raising it. “Chill,” they say. “I am chill,” I retort. “I can show you what a raised voice is, if you really want.” I grew up in a family of girls. There was always a commotion/emotion going on. We were verbal. By and large, men are not. They are the Neville Chamberlains of domestic life. Peace at any cost. They are not at all comfortable with female emotions. The higher female voice is a raised female voice, in their opinion.

If you pity your relative, this is going to come across even if you think you are hiding it. This is one area where I can claim the higher ground. I never pitied Chris, because I was determined that he was going to get better, come hell or high water, so there was no need for pity. That’s one reason why I deliberately avoided buying into the diseased brain model of schizophrenia that is perpetuated by some of the better known names in mental health.

Rushing your relative into something that he or she isn’t ready for sets the stage for relapse and all-around frustration. It is often hard to appreciate that just because your relative isn’t ready to take on bigger projects now, doesn’t mean that he will never be ready. Here, patience is a virtue.

My track record with regard to Expressed Emotion is pretty mixed, but I am aware of this and have been working on rectifying it.