Recovery: Why is it being redefined to mean “doing better but still mentally ill”?
A lot of efforts to transform an often oppressive mental health have focused on “recovery” and making the mental health system more “recovery focused.” Many agencies have integrated the notion of recovery into their practice, and if the use of this word were a measure of progress, we would be well on our way to system transformation! Unfortunately, what seems to be happening is that as the word “recovery” is used more and more, it seems to mean less and less. I know someone for example who is on heavy doses of an antipsychotic as well as other medications, lives in a foster care home, and spends most of his daytime hours in a mental health day treatment program, yet is assured by his case managers that he is “recovered.”
I believe that recovery remains a useful concept, but also that it will only give us leverage to change the system if we give it a clear and powerful definition, and resist efforts to water down that definition.
I would like to propose the following definition: Recovery means having regained a meaningful life, no longer having a mental health disability, and no longer being in need of any sort of mental health treatment. It does not mean that the person for certain will never need mental health treatment again in the future – the person might – but this is also a possibility for people who have never been diagnosed. It also does not mean that achieving a full recovery is the only way to have a meaningful life; instead, it is important to note that a person may find a meaningful life all the way along the journey to full recovery, whether or not that full recovery is ever accomplished.
(Recovery as defined above is a real possibility for people diagnosed with mental disorders. “Schizophrenia” is the diagnosis with the worst outcomes on average, yet when Harding did a long term outcome study of people who had been hospitalized for years with this diagnosis, she found that a third or so met this kind of criteria for recovery. It is unclear how many more might make such recoveries if we geared our mental health system toward helping people accomplish them.)
When we recover from a broken bone, we don’t still need a cast. We can eventually use the body part containing the formerly broken bone and it can eventually become as strong as it was before. When we recover from a cold, we eventually transition from “recovering” to “have recovered” at which point the cold is history. That’s a common sense understanding of the term “recovery.” But somehow when people talk about recovery from a mental condition, this common sense understanding goes out the window. Instead, there may be talk about people being “recovered” even though they still seem to require professional treatment such as medications, or there is talk about how one should expect to “always be in recovery.” What’s going on with that?
A number of things, it turns out. Pressure to define mental health “recovery” as something other than true and full recovery comes from a number of quarters, with a variety of different motivations. In what follows, I will attempt to outline most of these motivations and then show why each one leads to problems.
Historical connections with the physical disability movement
Some people see “mental disability” as similar to physical disability, and so seek to use the word “recovery” in a way similar to that used in the physical disability movement. In the case of physical disability, it is often clearly known that full physical ability cannot be expected to be regained. To inspire hope in such cases, it was found helpful to refocus on fully recovering a meaningful life, which could be done despite the fact that the physical ability was not going to be regained. In such cases, redefining “recovery” to mean regaining a meaningful life made a lot of sense, because that helped people focus on functioning at the peak of their potential, within the limits of whatever physical disability existed.
However, mental health “disabilities” are different from many physical disabilities, in that as far as we know, it is always possible for the person with the mental health disability to regain their full ability to be mentally healthy, while for many physical disabilities, this is not true. In the case of someone with a physical problem where recovery from the problem itself is possible, it clearly would be wrong to define “recovery” as meaning just regaining a meaningful life, while neglecting the possibility of recovering from the physical problem itself. For example, a woman with a physical injury that impairs her ability to walk may be able to regain a meaningful life by using a wheelchair, but if she might actually regain her ability to walk as well if given directed effort and therapy, then we would also want her to know that and to be given support toward the physical recovery. Similarly, the person with a mental health problem from which the person might recover deserves to know of the possibility, so that effort and assistance might be offered toward this accomplishment.
Efforts to focus directly on reducing mental health symptoms are often unhelpful
For a number of reasons, efforts to directly reduce mental health symptoms and so directly eliminate the “disorder” are either unhelpful or actually aggravate a person’s problems. An explanation of why this is so is available at http://recoveryfromschizophrenia.org/2009/08/how-to-recover-by-quitting-your-efforts-to-get-rid-of-symptoms/ In recognition of this fact, many consumers and others have supported efforts to redefine recovery as achieving a meaningful life despite the presence of mental health problems.
However well intentioned this may be however, it creates the impression that full recovery cannot be expected, and that one will always be a person with mental health problems struggling to find a meaningful life in competition with people who do not have mental health problems. Such an impression can create unnecessary hopelessness. A better approach might be to recognize that currently one might be better off accepting the mental health problems and refocusing on achieving a meaningful life, but also recognizing that in doing so one may possibly shrink one’s mental health problems to the point they are no greater than the problems in mental and emotional regulation experienced by all human beings.
Wanting to reduce stigma by allowing more people to feel they have overcome their “mental illness”
When recovery is defined in a common sense sort of way, as true and full recovery, then only those who have really overcome their mental health disorder related disability and need for treatment can define themselves as “recovered.” This means that all those who have not yet accomplished those objectives may be defined as “not yet fully recovered” and so may feel more vulnerable to stigma, or the sense they are “less than,” due to the absence of full recovery. So one approach has been to attempt to remedy this problem by defining recovery very broadly, so that as many people as possible can identify as having “recovered” rather than being “still mentally ill.”
Unfortunately, this approach creates more serious problems than it solves. By redefining ”recovery” as less than full elimination of the mental health problem, it creates the impression that full elimination of the problem is impossible, and so reduces hope and efforts toward real recovery. Further, once mental health workers and others learn that “recovery” means “still having the disorder but just functioning a bit better” then “being recovered” comes to mean “still mentally ill” and stigma continues anyway.
A better approach would be to work on reducing stigma as a whole, for everyone who has been diagnosed with a problem. One way to do this would be to encourage less focus on and less use of labels and more attention to the specific problems, and the specific abilities, of given individuals. With this approach, people can be dealt with respectfully in a way that matches where they are at all the way along the journey to recovery. And the message that a full recovery is possible can again be offered to provide hope to those on that journey.
Concern that a belief in full recovery will lead to the taking of inappropriate risks
When the criteria for full recovery includes “no longer needing treatment” there is then the concern that some people will be encouraged to abandon treatment too soon, while such treatment would actually still be beneficial for them. But if recovery is defined just based on functioning in the world, despite the presence of continued illness or disability, then this temptation is removed. With such a redefinition, it becomes possible that a person still depending on medications or other treatment, yet functioning well in the world, can be defined as fully recovered.
But defining a person as “fully recovered” while that person still needs treatment creates the impression that no further recovery is possible, which reduces hope that the treatment will eventually become unnecessary. If a person still needing a brace or crutch after a physical injury was told he or she was “fully recovered” the natural implication would be to believe that efforts for further recovery, resulting in eventual elimination of the need for the brace, could not be expected to be successful. When the treatment a person is depending on is potentially quite toxic, such as the antipsychotic medications, then defining a person as “fully recovered” who still depends on such medications will naturally result in the impression that further recovery is impossible, which in turn may result in unnecessary damage or even death as the person fails to even attempt further recovery that might eliminate the need for the medication. And just as dependence on a brace or crutch might limit physical performance, there is the danger for example that depending on medications such as the antipsychotics may unnecessarily limit mental and emotional functioning.
A better approach is to address the risk of treatment being abandoned too soon, not by redefining recovery, but simply by addressing this risk directly. It can be pointed out that abandoning a necessary form of treatment too soon might actually increase impairment and slow recovery. At the same time, the need to take some risks by experimenting with gradually withdrawing various treatments, at appropriate times, can be acknowledged to be a natural part of the recovery journey. Consumers can then be encouraged to make thoughtful decisions about when to continue and when to experiment with discontinuing treatments, using collaborative discussions with mental health professionals to think through relevant issues.
“You will always be recovering” – concern about underlying vulnerability
Another risk is that a person may see themselves as “recovered” and yet still have an underlying vulnerability to a recurrence of the disorder, resulting in relapse when the person fails to attend to the vulnerability. One way to defend against this possibility is to convince the person that he or she should forget about becoming “recovered” and accept instead an identity as “always recovering” which includes continued vigilance for the possibility of relapse. This form of thinking is common in the substance abuse field; once people stop using the substance, they are trained to always see themselves as more vulnerable than others to falling back into addiction, and so to see themselves as “always recovering” rather than “recovered.”
It is important to note that there is no clear objective criteria for how to distinguish a person’s precise level of vulnerability to either substance abuse or to mental and emotional problems, so there is no objective way to distinguish a person who might better think of herself as still “recovering” and another person who could safely think of herself as “recovered” and now no more vulnerable than the average person.
In the substance abuse field, the thinking is that it is usually better to be safe than sorry; since the treatment methods themselves tend to be non-toxic, if a person ends up feeling they are “still recovering” unnecessarily, the costs are likely to be minimal, compared to the risk of slipping back into addiction. Also, as long as one is doing well on the objective measure of how well one has escaped the active addiction – years of sobriety – there is comparatively little stigma attached to being defined as in some sense “still recovering.”
In the mental health field however, the notion that one can at best be expected to be “always recovering” is much more hazardous, and creates a murkiness that allows much of the real hope for recovery to be obscured. For one thing, if the expectation is simply that the person will be “always recovering” then the notion that psychiatric medications may have to be part of that effort at recovery is easy to introduce, and a person’s hope to ever be off dangerous medications may be dimmed. Also, the notion that one is “still recovering” from a mental illness implies that one is to some extent still mentally ill, a notion that can be used to justify lowered expectations for the person so identified.
It is true that if a person who in the past has had a mental health problem ceases to care for his or her mental health, there is a good chance that this person will experience a recurrence of the mental health problem. But a person who has recovered to the point where that he or she does not require treatment, may only need to do the same sorts of things to sustain mental health that other people, never diagnosed, also need to do to sustain their mental health. So rather than insist that people who have previously been diagnosed see themselves as “always recovering,” it is possible instead to notice how healthy mental habits are important to everyone. Early in recovery, developing healthy habits may take extensive conscious effort and support, but eventually such habits may be as strong (or even possibly stronger) than they are for healthy people who never experienced a breakdown. Framing this possibility is important, because it nurtures belief in the realistic possibility that a previously diagnosed person might eventually compete in various arenas where mental health is important, on equal footing with people who never have had a mental health diagnosis.
Concern for profit
When a full recovery is seen as a possible and desirable goal, then a shift to the elimination of the need for mental health treatment in a person’s life is also seen as a desirable goal. But such shifts reduce the chance for profits in the mental health industry, which does best when people become “consumers for life.” Pharmaceutical companies, organized solely around the goal of profits, naturally oppose any message implying that the need for their product might be eliminated.
It is critical though that the mental health system be readjusted to focus on the wellbeing of the people it treats, and that perverse incentives of various kinds be removed. In particular, research and education needs to be taken out of the hands of the pharmaceutical companies, so that the focus goes back to what is good for people instead of profit.
Worry of professionals that they will be seen as incompetent
When crisis occurs and emotional arousal is high in all parties, there is considerable pressure to have the “right” solution. In our society, this is expected to be provided by trained professionals who have many years of college education which is supposed to train them in precisely what to do in such a situation. This puts extreme pressure on mental health professionals who respond to a mental health crisis and to all of the confusion around it. The mental health professional may not be able to understand what is going on in the mind of the person at the center of the crisis, what caused it, or how to really help the person. One way for the professional to handle the pressure on him or her is just to reduce expectations, and a key way of doing that is to define the person at the center of the crisis as having a “biological illness” that results in thinking and behavior that is “not understandable” and from whom the best that can be expected is the modest improvement that is likely from the treatment the professional knows how to provide, psychiatric medications. Full recovery can be defined as impossible, and recovery can be redefined as adjusting to and getting support in “living with the illness.”
All this leaves the professional defined as quite competent, and no longer in crisis due to not knowing what to do. The problem is that the person at the center of the crisis, the diagnosed person, is now likely to be in a state of hopelessness, defined as biologically ill, not understandable, and with no hope of a full recovery.
What would work better? First, it would help if mental health professionals had more competent training, so they were more capable of understanding people in the middle of a crisis, (for example people experiencing “psychosis”), and able to provide assistance other than medications. (Those not motivated or inclined to develop such increased understanding might better be encouraged to seek other occupations.) The hiring of more “peer professionals” would also be helpful, as these are often people with naturally higher levels of understanding due to their own experience.
But even with the best training we might provide, and selection of the most competent and caring individuals we might hire, there would still be much happening in many a mental health crisis that would go beyond the ability of the professional to quickly understand or resolve. What is critical at such a points is for the professional to be able to admit his or her uncertainty about what is going on and about how to resolve it, without pretending to know that there is no way the consumer could be understood, and without pretending to know that recovery is impossible. This means that the professional must lower expectations about him or herself, stepping out of the role of someone who “really knows what is going on” and adopting the lesser role of “someone who has some training that might help some, but only to a point.” Here it is the professional’s willingness to be seen as less competent than others might expect, that creates the space for hope that the diagnosed person may have more possibility for improvement, including hope for full recovery. The fact that the diagnosed person has not recovered at any given point may for example be due to not having yet received the sort of help which might be effective, rather than due to that person’s intrinsic hopelessness.
So what we need are professionals who have hope that their clients can be understood and helped to fully recover, and who are willing to and capable of thinking deeply about how to assist with that. Further, these professionals must be able to accept the moments when they don’t know what to do to make such a recovery happen, without attempting to resolve that uncertainty by redefining full recovery as impossible.
There are no good reasons to allow mental health recovery to be redefined as in effect “doing a bit better but still mentally ill.” Nor are there good reasons to define it as a goal that can be approached but never reached, as in notions about a person “always recovering.” Instead, we need to insist that real and full mental health recovery be understood to the best of our knowledge to be possible for everyone. Further, we need to insist that all mental health treatment be geared to support progress toward such a recovery, rather than geared to maintain people as lifetime consumers of mental health services.
1. Some people resent the notion of mental health “recovery” because they feel that their only problem in the first place was having been labeled as having a problem. Certainly, there are some people who get pulled into the mental health system who would have done fine had they been left alone: in such cases there never was a disability or need for treatment, so what is needed in that situation is more of an “escape” from the mental health system, rather than a recovery from any mental or emotional problem.
2. Strangely, the effort to define people as “recovered” who still need treatment, results in mental health professionals telling clients they have recovered even as they turn around and diagnose the same clients with mental disorders so they can bill insurance companies for the treatments still being provided. Only in “mental health” do people receive treatments for disorders they have already recovered from…….