Category Archives: Recovery Movement

It’s Not Recovery, It’s Remission or Positive Management

By Marvin Ross

Anytime I criticize the recovery concept in mental illness, I get push back. I’m not surprised but the notion that recovery empowers people and gives them hope does not make sense. What I was pointing out in an earlier post was this. If you can’t recover fully or improve significantly, then recovery suggests that you weren’t trying hard enough and you are a failure.

It is only in mental illness among all the chronic illnesses where recovery is talked about. The dictionary definition of recovery is this:

“the act or process of becoming healthy after an illness or injury : the act or process of recovering. : the act or process of returning to a normal state after a period of difficulty. : the return of something that has been lost, stolen, etc.”

People can recover from a bad cold or a broken bone but they cannot recover from a chronic illness regardless of what they do. Recovery is a term or concept that comes from addictions and is misapplied to mental illness. A recovered addict is someone who has stopped using addictive substances. Someone with a mental illness cannot suddenly stop being mentally ill. What they can do with the help of health professionals is to deal with the symptoms as best as can be accomplished and to reach a state of good management of the disease – a form of remission.

If you want to call that recovery, OK but it isn’t a true recovery. Whatever caused the illness in the first place, cells running amok as in cancer, immune systems attacking its own body as in autoimmune diseases, tangles and placque in the brain from Alzheimer’s, remains. Medical management has not progressed to the point where these conditions can be reversed. The best it can do is to help with the symptoms and to provide supports to make the life of the sufferer as good as it can be.

The concept of recovery does not take into account the variability of diseases. Symptoms are not always exactly the same for everyone nor are they of the same intensity. When someone is diagnosed with a chronic illness, they (and the family) get an explanation of it from their doctor. They are told what to expect and what the treatments are. Those treatments will include medications, education, and other relevant strategies.

This is where lived experience comes in. That is another stupid term in my opinion. Because each individual is different, their health care providers ask about their symptoms, severity and how various treatment modalities are working. The doctor knows the disease, the science, the treatments but only the ill individual knows how he or she is coping and what may or may not be working and the potential side effects. That is the lived experience they bring to the appointments and it goes for every malady.

The lived experience as part of the therapeutic alliance between health care providers and their patients has always existed. Lived experience reminds me of a panel I was asked to participate on for a “new innovation” – patient centred care. I did not endear myself to the hospital staff and doctors when I asked what was such a big deal. Central to hospitals and doctors is the patient. Without us, they have nothing so if patient centred care is such a big deal, where did the patient fit in before? It and lived experience are but fads and buzz words.

The proponents of lived experience then usually jump to the need and importance of  peer support as part of the therapeutic regimen. That’s fine as long as what it does is to provide a buddy with information, education and coping strategies. Most, if not all, chronic diseases have support organizations. The cancer society, arthritis, lupus, MS, you name it and all do that. But that peer support is not a substitute for the medical specialties.

When anyone is first diagnosed with a chronic condition, they are given some parameters. If you have type I diabetes, the parents (because it is from birth) will be told that it will be necessary for the individual to take insulin for their entire life and to be very careful about diet.

That insulin analogy is often used with schizophrenia. The person is told that they will likely have to take medication for the rest of their lives like an insulin dependent diabetic needs to take insulin. It might not be the best of analogies but it is used and it certainly makes the point. I suspect, but I don’t know for sure, that the much maligned idea that there is a chemical imbalance in the brain with mental illness was nothing more that an analogy to explain that which cannot be explained.

We all ask the cause even though there is never a good explanation. Why do I have inflammatory arthritis? It’s autoimmune but what does that really mean? My rheumatologist would probably shrug and say your immune system suddenly decided to attack your body. Why? No idea. How? No idea but take this and it may help reduce the inflammation (or not).

The patient or family asks why schizophrenia, bipolar, severe depression and the doc, at a loss, says there is a chemical imbalance in the brain. Well, maybe not but the brain is messed up and all that does is to give what sounds like a plausible explanation for the unwanted ailment.

The bottom line in all this is that when you do have a chronic illness, then you manage it as best as it can be managed so that you have as good a life as possible with the deficit. It’s not a cure and it’s not true recovery but it is the best that is available now. So, enough with this recovery talk. It is time to be realistic.

Advertisements

Further Reflections on the Misguided Concept of Recovery

By Marvin Ross

Last year, I wrote about what I called the unintended consequences of focusing on recovery in schizophrenia. I’ve also published an e-report called The Emergence of the Recovery Movement by Lembi Buchanan that explores the anti-psychiatry and anti-medication underpinnings of this movement.

In October, the New England Journal of Medicine published three articles by cardiologist Lisa Rosenbaum. The first is called Liberty versus Need — Our Struggle to Care for People with Serious Mental Illness which contains a section on recovery. The other two articles are listed and linked on the right hand side of that page. Toronto psychiatrist, Dr David Gratzer, brought them to my attention and then I discovered that my friends at Mad In America (MIA) detested the articles so, from both sources, I knew they would be good.

Comments by MIA on the article include:

“This is paternalistic rubbish”

“It is no wonder that people are turning against such white, wealthy elites, as exemplified by recent events such as Brexit and Trump’s election, when so many experts such as this (white, wealthy) psychiatrist think they can impose their view about who is right on common people and their families.”

“The arrogance is a notch higher than you might have realized. The author is a cardiologist.”

Dr Rosenbaum mentions that the Recovery movement began partly to combat stigma by pointing out that US policy makers wanted to show that people could get better. She quotes a 2003 report that said “because recovery will be the common, recognized outcome of mental health services, the stigma surrounding mental illnesses will be reduced, reinforcing the hope of recovery for every individual with a mental illness”

She then quotes psychiatrist/historian, Joel Braslow, stating that “What unifies the (recovery) movement is its self-perception as a radical departure from the past.” Consequently the problem with recovery, she says, is that it becomes antagonistic to and a subtle rebuke of psychiatry. Thus, psychiatrists are seen as having created dependency so that their patients will need them forever. To this she says that “psychiatrists are no more responsible for the chronic needs often associated with schizophrenia, for instance, than medical doctors are for those associated with HIV.”

The needs are there because of the disease and not because of the efforts of those treating the sufferers.

If you defer to the patients’ choice, a positive outcome is guaranteed because success is self-determination. Whatever the patient decides is in his or her best interests is a positive outcome even if objectively, it is not. And she cites recovery maven, Patricia Deegan, who wrote “Although the phenomenon (recovery) will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it” That reasoning, says Rosenbaum, stifles dissent because who can argue with lived experience.

And she cites Oliver Freudenreich, a German-born psychiatrist who now practices at Massachusetts General Hospital. He pointed out to the author that “It’s a very American idea: if you try hard enough, pull yourself up by the bootstraps, you can do it.”

It is that last statement that bothers me the most because many people cannot recover to the point where they have no deficits and need no medications. Anyone who can’t (and they are in the majority to varying degrees) are made to feel like it is there own fault that they are not better.

Most people are familiar with the concepts put forth years ago by people like Dr Bernie Siegal (Love Medicine and Miracles) and Norman Cousins (Anatomy of an Illness) who talk about curing your diseases with imagery, positive thinking, laughter and relaxation.

These ideas were studied in the case of metastatic breast cancer and there was no improved survival at 5 years. The latest Cochrane metaanalysis concluded that “there is a relative lack of data in this field, and the included trials had reporting or methodological weaknesses and were heterogeneous in terms of interventions and outcome measures.”

A number of years ago, I had the opportunity to meet with a number of women who were involved in one such trial on survival. The most difficult article I’ve ever done because I sat with about 10 women all of whom were terminal and about to die. All of the women told me how desperately they wanted to live and how they hated Bernie Siegal and Norman Cousins. Their philosophy, they said, suggests that if we die from cancer, it will be our fault – that we did not work hard enough to think positive thoughts and to will our cancer away. That is not the case at all. Their will to live was not able to stave off the consequences of advanced metastatic cancer.

Nor is it the case with people with schizophrenia or any other serious mental illness who are not able to throw out their pills and return to good health. Many (or most) will continue to need them and will continue to need support to varying degrees. If they cannot achieve what has been arbitrarily defined as recovery, it will have been their fault. It is not! They should be supported in whatever it takes to keep them as well as they can become.

How Did We Get Here? Further Reflections on Recovery in Mental Illness

David Laing DawsonBy Dr David Laing Dawson

When trying to understand society’s, or a country’s, concepts, thoughts, approaches to, treatment of, mental illness, we can look at medical and scientific progress: This is the “march of progress” approach to understanding history – our advances in diagnosing and treating mental illness over the past hundred years. But history also tells us that attitudes toward mental illness have always been influenced by the economics of the time (only when we can feed our own children do we have the capacity to worry about our strangely behaved neighbour), our preoccupations of the time (being at war leaves few resources for the mentally ill), and, finally, the folk wisdom of the era.

Folk wisdom – the thoughts, rationales, explanations, assignments of responsibility and blame that linger in our consciousness long after being modified or disproved by science. Our brains are programmed to look for causation, a way of understanding an event, and, wherever possible, to ascribe blame. We also quite naturally and quickly look for a cause, a thing to blame, that we ourselves can avoid.

It is reported that a man younger than myself dies suddenly. I can’t help it. I search the report for cause, and relax when I find that he was a heavy smoker, which I am not. A woman is assaulted after midnight in a sketchy part of town. We know it’s wrong, but our brains immediately ask, “What was she doing there?” The child is behaving badly. We immediately think, “He could use some better parenting.”

It is always surprising to hear nurses blame the full moon for a perceived increase in the number of patients flooding the emergency room, though this “lunacy” has been thoroughly debunked by science. And otherwise intelligent people continue to ascribe perceived behavior to an astrological sign, or numerous other semi-mystical notions of alignment, karma, vapors, chakras, auras, and miasma.

Most of all it is comforting to think that if we behave well, and morally, and kindly, pray before bedtime, and avoid certain pleasurable but dangerous substances, we can also avoid dis-ease, illness, and a fall from grace.

We know that alcoholism and addiction include an action taken, engaged in, by the sufferer, engaged in willfully, of free will, and that recovery from addiction will entail a mind set, a decision, a commitment, a major effort on the part of the sufferer. So with alcohol and addiction programs this process is supported, encouraged, often through peer support, non-judgmental encouragement, soul searching, an acknowledgement of weakness, a trust in a “higher power”, and even, in some programs, forms of confession and penance. When we talk of treatment for alcoholism and addictions we are really using the word “treatment” to mean a complex sophisticated form of persuasion. We don’t really have a treatment for those two problems beyond persuasion and support.

In the post WW II era, our mental hospitals became “psychiatric hospitals”, and, a few years later, at least one ward in most general hospitals became a psychiatric ward, or colloquially, a “psyche ward”. This naming was important. It acknowledged a medical specialty, and a group of diseases treated by that specialty, much like an orthopedic department, a gynecology wing, a surgery ward. In fact the federal funding in Canada to support general hospital psychiatry wards (via federal provincial transfer payments) was a considered effort to acknowledge mental illness as illness, deserving of the same attitudes, funding, and professional support as “physical” illnesses.

Through the 1970’s and 80’s it appeared to be working. Programs were developed, new more effective medications were developed, attitudes were changing, physical facilities were improved, and maybe, we thought, this de-institutionalization will work.

Mind you, addictions got short shrift from the mental health system in those years (though the hospitals were psychiatric hospitals, the overall system of care was still called “the mental health system”). Generally addicts and alcoholics were told that they would have to get those problems attended to before we could help them with their mental illnesses. They had to first attend detoxification programs and then alcohol and addiction programs, which often had little patience for either mental illness or psychiatric treatment.

So detox centers, alcohol and addiction treatment programs developed apart from and separate from psychiatric wards and hospitals. And from these centers the “recovery model” developed. The word alone is nothing but positive, but it contains all the implications and expectations and attitudes outlined four paragraphs above. It implies that full recovery is possible, if you put in the effort. Peer support, will power, the power of positive thinking, goal setting, avoiding negative thinking, take life a day at a time, take responsibility for yourself……..

And, absolutely, for addictions and alcoholism, recovery can be defined as a life free of alcohol and drugs, and it is certainly achievable.

And through all this, our folk wisdom, that wisdom that often governs legislation and attitude, maintained a conviction that, ultimately, alcoholism and addictions are the sufferer’s responsibility. If he does not get well, or clean and sober, he is culpable, or at least, ultimately, to some degree, the architect of his own fate. And folk wisdom was shifting to believe that this is not true for schizophrenia, manic-depressive illness, depression or anxiety disorder. These are illnesses requiring treatment. They are usually chronic illnesses. Full and complete recovery is rare, though medications can alleviate symptoms and prevent relapse. There is nothing the sufferer can do on his own to prevent or stop these illnesses. And for these illnesses we do have actual treatment.

And then…. actually I’m not sure how this happened…. but somehow the bureaucrats and perhaps a few idealists, managed to bring these two systems under one much more economical roof. Three words were lost in this recent transition: “psychiatric”, “illness”, and “hospital”.

And suddenly we now have a multitude of “Centers for Addiction and Mental Health”.

And while this undoubtedly saves money, and perhaps serves better those who suffer both addictions and mental illness, it has had, in my opinion, some very negative unintended consequences.

  1. The recovery model, well suited to addictions, has been foisted upon those suffering from mental illness.
  2. The stigma of mental illness has been entrenched by the use of the paradoxical euphemism “mental health”.
  3. We have inadvertently allowed the folk wisdom of acknowledging personal responsibility for addictions (blame) to rub off on those suffering from diseases of the brain, those suffering from schizophrenia and manic-depressive illness.
  4. And ultimately it has allowed us well-meaning citizens to feel comfortable that now, not in 1950 or 1960 or 1970, but now, in 2014, our jails and prisons are filled with the seriously mentally ill.