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.

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9 thoughts on “Further Reflections on the Misguided Concept of Recovery

  1. I agree with your observations about the reduction of stigma being a driving force behind the recovery movement. And it has become its own source of stigma, as you described. I would add another reason the recovery movement has flourished. I’m old enough to have seen first hand the abuses of a mental health system that was condescending at best and mostly unmitigated pejorative arrogance. In the 70s and before, the diagnosis of schizophrenia was a life sentence of incarceration in a hospital. Around that same time, substance abuse programs began to address cooccurring problems, although they always kept the recovery model with self-support groups as a program component. Psychiatric programs also acknowledged that 40-60% of their patients had cooccurring substance abuse problems, so they started using groups. Eventually programs like WRAP (Wellness Recovery Action Plan) emerged. WRAP is an excellent concept that is simply substance abuse relapse prevention concepts revised to work as illness management training. So recovery became so appealing because it provided the human affirmation and support as well as practical daily illness management skills that were missing in typical psychiatric treatment.

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  2. I agree THAT THE ANTI-STIGMA MOVEMENT WAS PRETTY DUBIOUS TACTIC IN THAT DOLLARS WOULD FLOW AND DIVERT DOLLARS FROM APPROPRIATE HEALTH CARE It was predictable from the beginning . It was a ruse from the beginning and put dollars into often the wrong hands. Recovery was preached from the hilltops, but let a lot of people down as well as even more family blaming . To deny that an illness is long term is another form of stigma.” Every one can work” they said.. Well they can’t but they can be given proper healthcare if there is a will to do so.

    Bravo Marvin again you have identified the nonsense.

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  3. Those who do not fit into the category of working towards “recovery” and the families who stand by them are overlooked by policy makers and many mental health professionals. Most policy makers and many professionals do not have a clue about the day in day out ramifications of serious mental illness. And do not appear that they even want to know. Deliberately avoiding such a compelling issue is an act of profound negligence.

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  4. As a concept recovery inspires hope. It must be noted though that this recovery is in fact personal not clinical. I would caution you not to make the same mistake that you are accusing others of doing. The Recovery Model is a very helpful and useful tool. The twin pillars of person centred and strength based practise are vital in supporting the model as used by a person’s support network, both clinical and nonclinical and the person themselves. It recognises that a person is not simply mentally ill but is a person whose life is affected by the experience of a mental illness. Semantics? No! Truly the second interpretation is more accurate than the former.
    Is it become a tool to fund inappropriate interventions? Well yes it can be. When a applied by incompetent services or clinicians. The model allows a person to identify there strengths rather than focus on the weakness. This , if done well, improves the quality of the life lived and recognises that while the life experience of illness is fundamentally difficult it does not have to be the entire focus of that person’s life which is the majority experience. So, a personal recovery is a powerful thing on it’s own.
    There are many flaws of delivery to be worked out. But an all-encompassing rejection of the model is unwise and potentially damaging to those who need the perspective it offers.
    Anyone saying differently is deluded or is too rigid in their thinking. The model empowers the individual. Would you take that from a person whose life is complicated and often dominated by the experience of their illness?
    When first introduced to the idea I was gobsmacked. Improvement of personal circumstances and the daring concept of hope was an enormous change of perspective. . I know that this recovery is independent of my symptomology.
    Unfortunately as there has always been, there are groups and individuals who rage against psychiatry and psychopharmacology. The agenda for the groups is based around paranoid fantasies and the short comings of medications and therapies. And there are shortcomings. Psychiatry is a science based art. It requires a skill in delivery that really can only be developed over time through experience with patients. That experience is not science. It is rarely repeatable or transferrable from one patient to another. Being an interpersonal discipline the effectiveness of the psychiatry is based mainly in the understanding of the individual’s experience of the effects of illness in their lives and how treatment options will or won’t work for them.
    Of course individuals have claimed a negative stake in psychiatry as well. This is simply a reflection of the shortcoming of the discipline. Many of us in conjunction with our clinicians strive to find effective treatments. It is quite often the case that the appearance of trial and error is at work within that treatment dynamic. This is a real experience. Because of this many people feel let down and look for a scapegoat. There is also the idea that everything is treatable. If a patient presents without improvement then that patient might after several changes in treatment, find such a promise as disingenuous.
    In my experience with complex PTSD, I was not promised any kind of cure or treatment that would “fix me right up”, there was no magic wand. I knew that and my clinician reinforced that. I am now on an unusual combination of meds that appear at this point to be working, but it’s been 14 years of trial and error.
    It doesn’t help that side effects to many drugs are simply too much to bear. I might well argue that we should direct our ire at Big Pharma, for putting patent based profits before better developed medications, rather than the discipline of psychiatry. But if psychiatry rails against this most useful model, it shows itself as being no better than the conspiracy theorists. I suggest we should all work toward making both kinds of recovery (clinical and personal) an experience that helps the individual grow and achieve quality in the lives lead.

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  5. You have simplified recovery here. Many people who use recovery principles continue to take medication and believe they have illnesses. There is much more nuance than what you describe. Health care providers are more guilty of using this philosophy to limit treatment and outright deny help. For every person who does not want and resists treatment, there are a hundred, many who are seriously ill, who cannot get it. I wish you would focus on that more: peopke like Vincent Li who were turned away.

    Recovery is a necessary concept for many of us who had hope killed when we had psychotic episodes and were offered no practical help or life skillls. We believed our doctors and went home and took our pills, collected income support and expected nothing. You have no idea of the power of the words of experts on a person’s self-worth.

    I was written off and continue to struggle. But it is my stubborness, good financial support, and basc recovery principles that allowed me to have a quality of life. I completed a masters degree, live independently, and currently work for the federal government. I was advised to giv up school, never work, and anticipate repeated hospital stays (and i have had many and many treatments inclusing ECT).

    About three years ago, I was hospitilized involuntarily at CAMH where recovery was used to shame a woman who returned early to the unit, to remind us that we were lucky, and to remind us not to use scarce mental health resources.

    My beef with recovery programs is that they individualize people’s real social problems. No WRAP program will build social housing or crisis services that do not use police as first responders.

    It is disingenuous to lump recovery with antipsychiatry. Antipsychiatry would say there is nothing to recovery from apart from the oppressive institution of psychiatry.

    Recovery has given people hope and possibility. Perhaps it is sometimes false but a life without hopes and dreams is a living death.

    A J White

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    1. Thank you for your comments. I think some of what you said will be explained in my blog coming on Monday. I do focus on the lack of proper resources like beds, supportive housing, too few doctors, and life supports in other writing I’ve done here and in the Huffington Post. And I agree that Vince Li would never have committed his crime if the Toronto hospital he had been taken to by the police had not discharged him early and without follow-up. I mention that in a lot of what I write.

      Not all doctors (including psychiatrists) are competent and compassionate and that is a sad reality. It is often difficult when you get someone like that to move to a better doctor so all I can say is try. Everyone regardless of the illness, needs a strong advocate to deal with hospitals and doctors but that is not always possible.

      Take a look at the book page of this blog for books by and about those with schizophrenia that I’ve published. Their experiences are varied from very negative to very positive.

      Marvin

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