Questions and Answers about Recovery
Question: Experts often say that there is no cure for “schizophrenia” (or similar disorders such as “schizoaffective”): so how is recovery possible?
Answer: It is true that there is no “cure” in the sense of a treatment that can be applied by a professional that reliably makes the problem go away. But it is also true that we have no “cure” for the common cold, and yet fortunately, people do recover from them! In the case of disorders like “schizophrenia,” recovery is less certain, but it is still a reality for many[i]. Those who do recover most often give some credit to other people who helped them believe that recovery was possible. It’s interesting that while recovery from colds happens whether or not we believe it is possible (because our immune system does the work), recovery from disorders like “schizophrenia” may require belief that it is possible, because such recovery typically requires a person’s own effort. People are unlikely to exert this effort if they lack a belief that it may succeed.
Question: Why do you put words like “schizophrenia” and “schizoaffective” in quotes?
Answer: People are often tricked by big words like “schizophrenia” into feeling they are, in Rufus May’s[ii] words, “the passive victims of an active illness.” But feeling like a passive victim is not an attitude that aids in recovery. Instead, it often helps to see words like “schizophrenia” as just labels that psychiatrists use when people have certain experiences and behave in certain ways. (After all, the only way a psychiatrist can make a diagnosis is to ask people about their experiences and notice how they behave: there is no laboratory test.) People typically have the experiences and behave in the ways that get called “schizophrenia” in response to stresses of various kinds; then they get further stressed out by having the odd experiences & by having to deal with the reactions of other people to their communications and behavior. Recovery is often facilitated when people focus directly on how to manage this stress and how to reconsider their points of view and change their communication and their behavior, rather than trying to fight or escape from some abstract entity such as their alleged “schizophrenia.”
Question: What does it mean to recover?
My answer: Full 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. This definition of “full recovery” should be contrasted with the definitions used by some who suggest that recovery should be thought of as learning how to have a better life, while continuing to be mentally ill and needing treatment such as medications.[iii] Of course, lesser degrees of recovery can also be very important, and it is important to recognize 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. But it is also important to recognize that many people do achieve full recovery, and that it is a realistic goal to work for, and something the mental health system should really be oriented to help people achieve.
(Note that while this definition of full recovery includes “no longer being in need of any sort of mental health treatment” it does not mean that the person must be certain of never needing mental health treatment again in the future – the person might – but this is also a possibility for people who have never been diagnosed.
It is also worth noting that other people have different definitions of recovery, that may emphasize other factors, and these definitions may work better for them! But I think the possibility of people getting to a place where they no longer are disabled or in need of any “treatment” should be widely acknowledged as a possible part of recovery.)
Question: What is the role of medications in recovery?
Answer: Everyone’s story is different, so there is no one answer to this question. But consider the following facts:
- Before medications existed, and currently in cases where people have managed to avoid ever getting medications, people have recovered from “schizophrenia” and similar disorders. (In fact, overall rates of recovery have not increased since medications were introduced, and recovery rates are typically higher in developing countries that have less access to medications.[iv])
- Some people have found that medications were initially helpful for them, but as they learned to take care of themselves in other ways, medications gradually became less necessary and were discontinued.
- Other people have found that medications were never helpful to them, and that recovery was impossible until they got off the medications.
- And some have found that staying on a low dose of medications while they pursue their dreams is what works best for them. Even if they believe it might be possible to learn to do without the medication, attempting to learn to do that is not as important to them as other life goals. While it could be said that they are not “fully recovered” because they still need treatment, it should be pointed out that full recovery is just a possibility, not a requirement that anyone must fulfill in order to have a meaningful life.
Medications are of course what can often make the biggest difference the quickest, and they are heavily promoted by an industry that makes billions of dollars of profits off them, so it is easy to be seduced into believing that they should be the cornerstone of treatment. However, they also come with heavy costs in terms of both subjective and objective negative side effects, and some of these effects can even be fatal.[v] A better approach is to first try alternatives wherever possible, so that at least at times medication use can be avoided altogether. [vi] And then, if alternatives fail to succeed and medication does seem necessary, use as little as possible and continue to search for other ways to improve coping over time so that medications can perhaps be eventually reduced or discontinued.[vii]
Question: If medications only help some of the time and even then are only some of the answer, then what really helps people recover?
Answer: “Schizophrenia” and other “psychotic disorders” typically involve responses to stress, responses that in themselves causes more stress to the person and which then cause reactions from others that increase the stress. Example: a man who suffered traumas in childhood loses his job and can’t find another, then starts hearing voices, fears the voices mean he is mad, then starts yelling at the voices, resulting in being evicted from his apartment, losing his friends, and is labeled as “mentally ill.” So what will help? It might be any number of things. Being around people who seek to understand his experience rather than label him, and who are friendly despite his odd behavior, can be a big start. Learning that voice hearing is a pretty normal response to stress and that there are ways to cope with it can help: this might be learnt in psychotherapy, or through peer support such as in a voice hearer’s group[viii]. Getting help getting housing and back to work can play a huge role in reducing stress. Certain dietary changes may help, as might a variety of practices that improve his ability to handle stressful circumstances, such as mindfulness exercises, yoga, physical exercise, and a long list of others. Once he becomes ready, he might find that therapy or other exercises that help him explore and accept his earlier traumas help reduce his vulnerability to stress in the future. Any of a variety of approaches that increase self understanding, including spiritual approaches, may be helpful. A key part of recovery is often learning that one’s brain does not have to work exactly like everyone else’s in order to be healthy: for example many people find that they continue to hear voices, yet once they accept them and know how to cope, they can move on with their lives without hindrance or need to change that experience.
Question: What kind of things get in the way of recovery?
Answer: Here is a partial list:
- The belief that recovery is not possible
- Failure to take responsibility for working toward recovery: expecting others to make it happen without your help
- Additional stress and trauma, such as that induced by being homeless & without a source of income, or the trauma often induced by forced and disrespectful mental health treatment
- Lack of social support and connection
- Believing that the disorder is simply “biological” and unrelated to stressful events or to how one handles stressful events
- Being labeled and categorized by others. Some say that it is more difficult to recover from mental health stigma than it is to recover from mental health problems themselves
- For many, medications. While medications at some points help some people toward recovery, they can also for interfere with recovery, for example by inducing passivity, social unresponsiveness, inability to think clearly, and failure to get the opportunity to learn that one can handle life without medications.
- Efforts to recover that are made too abruptly. For example, while medications may be causing problems, quitting abruptly may result in withdrawal or other problems that may then cause relapse or descent into even greater difficulties. And while a person may be capable of eventually handling stressful life circumstances, taking on challenges of any sort before one is ready can result in setbacks.
- Being too cautious, going too far to avoid risks. Recovery requires taking modest risks, with “trying, but not too hard.” Being too cautious leads to a continued perception of oneself as incompetent, and to never having the opportunity to learn competence.
Obviously, this is just an introduction to the topic of recovery from “schizophrenia” and similar disorders. To learn more, it can help to read stories of those who have recovered, such as those found at http://bipolarblast.wordpress.com/recovery-stories/
where I address a wide variety of issues related to the understanding of psychotic disorders and to recovery, and provide links to other resources.
[i] For a summary of the research on recovery from “schizophrenia” see “Long term follow-up studies”. Also, for a very readable article on some of the myths about “schizophrenia” including the myth that recovery is impossible, written by one of the more prominent researchers, see the “Empirical correction of seven myths” article.
[v]For a summary of the hazards of antipsychotic medications, including the risk of death, and how practice might be different if people were adequately informed about them, see this Full Disclosure article.
[vi] For people who are just beginning to experience psychotic symptoms, simply going to psychotherapy with a knowledgeable therapist can be helpful – see the article cognitive therapy for the prevention of psychosis. And even when problems are more severe, most people can be helped without antipsychotics if proper help is available – see this article on a Finnish approach. Of course, when other forms of help are unavailable, people are often forced to rely on medication sooner.
[vii] See the Harm Reduction Guide to Coming Off Psychiatric Drugs for ideas about how to do this. Also, therapists might want to look at this Therapist’s Guide