Beyond Recovery?

Not so long ago I had an interesting conversation with my uncle, now 84, who practiced medicine all his life and has also been frequently depressive and knows a lot about psychiatry, both often as a patient and always as a medical professional. I mentioned that I am feeling better in various ways due to ever-improved “self-management” (all this jargon is due an overhaul!) including yoga and, of all things, oatmeal porridge. He commented that he thought I had “burn-out” and then explained that over time he had seen many people with so-called “serious and enduring” mental illnesses go into remission due to the illness “burning out”, especially as they got older.

This encouraged me enormously. I did some research and although, predictably, the so-called advice, evidence and discursive material about “illness”, bipolar disorder, is heavily prejudiced in favor of received psychiatric wisdom, there are a few outposts of conviction and lived experience persevering with the message that “severe” mental illness need not be a life sentence. I’m beginning to see that half the struggle of recovery is getting beyond the idea even that there is anything to recover from. This is not denial, but merely a way of reconditioning oneself. Like it or not, mental illness and its treatment can be a ghetto. Is it time for us to begin to throw off all our assumptions?

What is the basis for the current and growing obsession by society with mental illness? As someone apparently – hypothetically? – “recovering” from a “severe and enduring mental illness” you would think this opening to mental illness would to me represent a breakthrough and relief and even a kind of opportunity. Indeed, at various times it has been one or more of those. Yet now I wonder how much I want to live in what I call a “Supersick me” society where it seems everybody is due a diagnosis or seeking one.

What are the causes of this mental illness awareness, if that is what it is? Perhaps “Its time has come”; it is now safe to be open about it. Is it fashion: it is now “fashionable” to be mentally ill? Is it just that society is just sicker of itself and from itself?

Furthermore, what is the basis for my being sick of the whole subject of mental illness? Firstly, I don’t see myself as mentally ill. I am medicated, but that doesn’t mean I am mentally ill. It’s possible – call me deluded – that I have been misdiagnosed (many are) or that my medication has itself necessitated further medication (possibly true in my case) so that half my illness is due to its treatment. Given all of this, and that some people can grasp and act on the subtleties of their situation as service users, is it automatically a negative if the idea of “recovery” might include an overcoming and eventual rejection of the idea and belief that I am “mentally ill” and need to “recover”?

I have at one time or another since my diagnosis bought into and believed and usually experienced most of the issues and ideas attributed to someone in my situation including, notably, that – as it so glibly said – bipolar disorder is a “disease” (there is no biological proof that it exists, much less that it is a “disease”) and a lifelong, incurable “illness”.

Let’s leave out of this discussion for now questions such as, If there is no hard biological (and genetic) evidence that my “disease” or “illness” exists how can it be incurable? I may be wrong, it may be incurable, but forgive me for not wanting all my life to see myself as some kind of tolerable leper. Grant me real hope.

Assuming I am ill then I feel there is room for what I call an “aware denial”, a way to a new way, beyond “recovery”, that involves an aware denial of illness. By this I mean that as an aid to recovery I do not involve myself more than I need to in any aspect of “mental illness”. Clearly, medication has to be continued, though if possible reduced en route (I am in the process of reducing mine at last) but meanwhile I can maintain an aware avoidance of and denial of anything to do with mental illness. No support group dependencies, no reading of or as much as possible discussion of mental illness, never thinking of or describing oneself as mentally ill. Doing this I feed myself the most positive message that I can: Getting better is not just maintenance, it’s deliverance.

I had an interesting experience last autumn when I was interviewed for a documentary on a musician I worked with who has since passed on. For ninety minutes I gave forth on my musical pursuits and so forth and never once mentioned mental illness, being bipolar or anything else of the kind, and I left feeling wonderful, free, myself, and I suppose genuinely recovered. It made me realise how polluted I had let myself become with the idea that I am “ill”. I experienced myself as I was before diagnosis, with all my liabilities and issues but wholly myself and not half a creature of somebody else’s description and invention. I remembered who and what I am, the least of which is “ill”.

This is not about “pretending” one is or may not be mentally ill; it is about rising above it as a self-description. There also must ideally be no acknowledgement that one is “recovering”, because that means there is something to recover from.

It’s all about taking stereotypes such as “all in your head” and making them work for you: now that mental illness has been legitimized we have to talk and think and feel and be our way back out of it. It’s important for those branding themselves mentally ill to – if possible and it may not be easy – spend as little time as possible with people with “mental illnesses”. Accepted wisdom is that people with mental illnesses should be a lot of the time with those like themselves, but what does this really accomplish?

There could be many causes for what might be my “burn-out”. Given long enough perhaps many experience this phenomenon but it is little remarked upon or documented not because of some conspiracy of silence but simply because life beyond diagnosis and self-conscious recovery overtakes more ephemeral concerns. I’m still medicated and frequently considering myself “mentally ill”. I see, however, that all kinds of tantalizing possibilities lie in store if I can just stop telling myself there is something wrong with me.

When you begin to embrace idea that there is “nothing wrong” with you, you realise that ideas can become facts, and that a lot of what you thought was wrong with you was an idea…the fact is that you are fine.

Polypharmacy/Bipolar illness
A. Bipolar Illness Before the Psychopharmacology Era
Prior to 1955, bipolar illness was a rare disorder. There were only 12,750 people hospitalized with that disorder in 1955. In addition, there were only about 2,400 “first admissions” for bipolar illness yearly in the country’s mental hospitals.
Outcomes were relatively good too. Seventy-five percent or so of the first-admission patients would recover within 12 months. Over the long-term, only about 15% of all first-admission patients would become chronically ill, and 70% to 85% of the patients would have good outcomes, which meant they worked and had active social lives.
B. Gateways to a Bipolar Diagnosis
Today, bipolar illness is said to affect one in every 40 adults in the United States. A rare disorder has become a very common diagnosis. There are several reasons for this. First, many drugs–both illicit and legal–can stir manic episodes, and thus usage of those drugs leads many to a bipolar diagnosis. Second, the diagnostic boundaries of bipolar illness have been greatly broadened.
Lastly:
In a review of 87,290 patients diagnosed with depression or anxiety between 1997 and 2001, those treated with antidepressants converted to bipolar illness at the rate of 7.7% per year, which was three times the rate for those not exposed to the drugs. click here for links to numerous studies.

Empowerment, Partnership and Recovery: Ideal or Reality? By Jeremy Clarke

Mao Tse-Tung is not an obvious inspiration for the empowerment, partnership and recovery of mental health services and service users but it was reading “Mao – The Unknown Story”, the astounding biography by Jang Chung and her husband of Red China’s infamous tyrant that I found a quotation that sums up for me the attitude most conducive to both: “Ideals are important, but reality is even more important.” In my opinion, which is admittedly uninformed in many ways and only that of a self-educated service user, without recovery – of the service and its staff, and service users alike - there can be no empowerment and without equality there can be no partnership worthy of the name. What does the service really mean by these words and expect of itself, and of its users? If service users are genuinely empowered, how does their relationship with themselves, each other and the service and its staff change? Is partnership synonymous with equality, or merely a new expression of an old hierarchy?

When we use it in this new context, what do we mean by “recovery”? Meta Services, an American organisation who have helped pioneer mental health recovery peer support, define recovery as “Remembering who you are and using your strengths to become all you are meant to be.”

Closer to home, England’s campaigning advocates of recovery, rethink say, “Recovery can be defined as a personal process of tackling the adverse impact of experiencing mental health problems, despite their continuing or long-term presence. Used in this sense, recovery does not mean "cure"”

In Wales, to Hafal, who for some time now have offered their Recovery Programme, “Recovery means regaining mental health and achieving a better quality of life.”

There different definitions demonstrate that recovery can mean many things. One of its defining qualities, so to speak, is just this diversity, where the individuality of the experience and perception of recovery is reflected in the variety of its definitions. In the same way, to the degree that service users are empowered by services, they must empower themselves: by redefining their role, redefining their past, present and future, and by redefining their recovery, in ways appropriate, different and meaningful. To the degree that service users are partnered by services they must partner – say, befriend – themselves and each other, and partner services, with a new sense of capacity, responsibility and potential.

The degree of individual or collective service user involvement, assuming empowerment and partnership as outcomes of same, is determined by answers to questions such as “Is the user involved in decisions about their own care or service plan?” Now, how do we answer this, honestly, in a context expanded by empowerment and partnership priorities and in addition informed by a commitment to recovery? In my experience – by no means definitive, I admit – care and service plans are often subject to incompletion due to time and caseload pressures on staff. Paperwork must be streamlined and possibly parts of it completed by service users with minimal mediation; the latter has usefully been done in the past. If the care plan is about the service user then why shouldn’t they support their service by contributing to it with more than verbal answers? That’s equality. It’s empowering. It’s real partnership, and without fanfare.

Another question asked is “Does the user have any influence over the way that these services are then delivered?” The choice of the word “influence” here intrigues me. Why should a service user have forever to be satisfied with merely “influencing” service delivery? Shouldn’t empowerment bring real partnering in service development and the active encouragement of the training and employment of service users in the service?

Empowerment and partnership are, for me, precursors to and also the results of recovery. And powerful tools to give service users but, if you like, recovery is the engine room where they can really gain steam.

I didn’t always think this. In fact, I came to the idea of recovery by accident. At a time of resurgent illness, casting around for empathy and support, I unexpectedly found myself on a webpage devoted to service user articles, including those by influential pioneers such as Pat Deegan, Helen Glover and Wilma Boevink. Having heard nothing of recovery, I wondered: Why weren't all service being exposed to this hopeful, healing and most of all self-actualising message? Why wasn’t this material available as a matter or priority to service users? And why wasn’t local practise – because elsewhere it has grown and grown into a formidable force for practical, tangible change - lined up with such a powerful context for good?

It has become my conviction that embracing the recovery context and process is, at this time and for some time to come, the best chance mental health staff, services and service users have of transforming the way we look at, live and work with mental illness and transform it into sustainable mental health. Empowerment and partnership should be synonymous with recovery. I am not interested in being empowered or partnered on principle. I am interested in being well and acting from that with new intent. This assumes new strength. Do service users have such strength?

I have had the unusual role, for a service user, of co-facilitating recovery trainings to local mental health service staff. It’s worth noting that in itself this is a powerful example of how services are changing, and that I am grateful for the opportunity it gave me to meet and share experiences with local mental health staff, many of whom I know are now actively involved with embracing and creating the recovery context for and with their service users. At one point, during one training, when discussing care plans, staff present were asked what strengths they feel service users possess and demonstrate. Silence ensued, with the dozen or so staff at best bemused, at worst indifferent. As the sole service user in the room, and although generally benign on my service and treatment, I became irate. Were those engaged with commitment and caring for the mentally ill really at a loss to identify any strength in them? Even to many working for their welfare and interested in serving them better, are the mentally ill fundamentally helpless, the occasional, incidentally admirable “survivor” notwithstanding?

Many, including those who treat and support them- and the mentally ill themselves, frequently - see the mentally ill as weak. Yet survival of serious mental illness, living with it and recovery from it summon honesty and resourcefulness, coping strategies and adaptations bespeaking invention and determination, uniqueness and just plain stubbornness. There is nothing weak about the mentally ill. Strangely, the struggle by the individual against their illness – supported or not – confers upon them a degree of empowerment in itself. (As for an analogy for partnership in this situation, well, as one bipolar, I can say with equanimity that it comes from none other than one of my three selves.) The mentally ill can have, therefore, a strange kind of freedom services and staff don’t; this is why we should be talking to each others as equals and partners, not only to be equitable, but to learn from each other and merge the experience and knowledge we share. I know that this is happening more and more and has to an extent always happened; now it needs to become practise.

Over the recovery trainings I was taken, unexpectedly and spontaneously, on a journey of great personal significance and professional value. It caused me to re-evaluate and examine all of my experience since my diagnosis. It made me wonder: All the time we are told that mental illness is on the rise, more are depressed, stressed, anxious, more self-medicate, self-harm. Mental health care costs are set to rise steeply. Soon more than half the population of this country will be statistically mentally ill. And then, who will the mentally ill be? More and more of us seem to be and claim to be mentally ill, if only mildly depressed. Once the mentally ill are definitively in the majority we will be able to say that truly the lunatics have taken over the asylum. And what will that mean for those who run the asylum? Who dictate its policy and procedures? It’s a question I lay open to you. Where will we be, and what will mental illness be? We will be living a world of mental illness, not a world with mental illness. The fundamental distinction that has informed mental health care for generations – that there are more of “us” than “them” – will have gone. We will finally be equal and this knowledge will slowly but inexorably alter our relationship to each other.

Whenever service users become well and are recovering there are ripples and resonances felt by those around, and this includes in services. As the service user becomes more stable, strong and confident, services, staff, family and friends and partners all feel it and may question themselves. For all concerned this is a constructive process, if at times disconcerting, and where the service is concerned it is yet another instance where the processes of the service user mirror their service, in the sense that as the service empowers and partners service users, its role will be questioned, challenged and transformed, too. It is this mirror process that has so much to teach service users and their service about what they have in common and share, usually without even realising it. Recovery will pull in the service and force it to recover its perspectives and preconceptions. Empowering service users is a great aim, and partnership a crucial outcome, but if it is going to be truly meaningful then the service has to be aware that what is being asked is not just change for its own sake or even for the service users’ sake, but change for the sake of an important principle: service users are equal now. This is what I mean:

Just as, at the moment, the service is only just awakening to and acknowledging its need to recover, service users are likewise only becoming widely aware of the need for seeking their own recovery. Neither is at fault. In order to work effectively with their service, service users must take ownership of their illness and lives. And the service must stop holding the illness for them, and start holding the hope. Not the recovery, though, because the recovery is the context: it holds us.

Embracing recovery will transform the way staff and services work. Services, like its service users, may go through stages of self-acceptance, self-awareness, self-forgiveness and be willing to release old preconceptions and patterns. Service users should be trained to support each other in recovery and support recovery of services. Service users can be experts not only about themselves but also services in general. Already we hear about very successful peer mentoring and other service user projects that support and train the mentally ill to recover each other. It isn’t that we want to remove you. We want to work with you.

For some it is tempting to criticise the mentally for daring to hope for recovery. They are entitled to do so, but often these critics do not understand that most mentally ill people are harsh self-critics and without good reason unlikely to give themselves the benefit of the doubt. Experience of mental illness of any severity breeds poor self-esteem, corrupted confidence and fractured faith in oneself and life in general. Indeed, many of us don’t have any faith in the idea of recovery. Coming to recovery is, for many of us, a road neither straight nor comfortable to tread, but even if it is a vain dream, recovery is one worth having. Waking from it cannot be much worse than the nightmare of futility that many mentally ill people live in.

Empowerment and partnership need not be complicated concepts in application, but firstly touchstones of humanity and simplicity. If you allow service users to really be heard, to express what they want, and treat them foremost as people rather than patients, then the change necessary can happen naturally. I am not deluded enough – and believe me, I am no stranger to delusion – on this subject to think that a magic wand exists. What encourages me, on the contrary, is that my own experience and that of others points to a process that can take root, grow, and then flourish in the hardest ground. And we say, simply, let us work with you more.

One way in which this can begin is by encouraging and supporting services and service users in questioning themselves and each other. It is still sometimes the case that staff know little or nothing about those they look after. It is essential that staff begin to talk with service users and not only to them. Interaction between staff and services and services users can begin to involve genuine. The mentally ill have stories to tell about themselves, each other and others not ill as they are that are worthwhile and revealing. The mentally ill, like some other marginalised and maintained conditional members of society are often difficult to understand and empathise with, relate to and relax around, but they are some of the most unusual, raw and paradoxically alive individuals you will encounter.

What matters most is that individuals be given the opportunity and support and encouragement necessary to recover to the point of which they are capable. Each recovery is unique and important, no matter how it is achieved. Recovery is little evidenced, which is unfortunate because the scepticism about its reality might be challenged by in-depth, service-led statistics. Service users must be heard, not just listened to and patronised, both in an out of the service, and in a sense even more when they have left it for greater health. How did they do it? What combination of personal, professional, medical and other factors supported or triggered what is often genuinely a transformation?

Recovery is, in a sense, a map that creates itself as it is used. There is an initial design, but it reveals itself as plastic and mutable. Recovery is a chameleon and just as some mental illness is characterised by a knotty and detrimental shifting of shapes of identity, so in a more positive way recovery is in part a process of ongoing reinvention and metamorphosis. It asks a great deal of us but can repay in kind. And there are many surprises. The recovery map has another side. As it leads us to increased wellness and accommodation with ourselves and the world outside our minds, it also can hold threats: as we get better, it is not always obvious or easy in what ways we live with our emergent recovered selves. We have more self-awareness, more responsibilities – to ourselves and others – and more risks to take. This is why I feel it is important to work with recovering (and other) service users in a way that can acknowledge, without validating, their doubts and fears. For example, where a relapse occurs, which can often signal a significant dip in self-confidence and belief in the recovery process, it can be acknowledged – without defeatism – that it has happened and had even severe consequences. What shouldn’t happen is a validation thereby that it is able to derail recovery. This attitude is essential to master for both the one recovering and those supporting them. One way or another we’re all going to recover and that includes local mental health services. The necessity of recovery will ensure this outcome. The only question is: how fast?

Equality can take many forms. Lately I have asked myself: What is the service that I am offering that you are using? My service is that I am mentally ill, I am open to you, I permit myself to be treated and supported by you…I am therefore clear that you are also my service users. I want it acknowledged for all service users that just as we use the service, so the service uses us. And this gives a basic equality.

Empowerment and partnership are given meaning primarily by practical and simple measures. By making services users, in essence, part of the service, but in a new, more active and dynamic role. The primary objective of empowerment and partnership can only be this kind of shift. If only the service changes, no matter how dramatically for the better, there will still be imbalances. The service will be better, which is good, but the service users will still only be its beneficiaries, which may also be good but which does little to elevate them from a position of dependence and types of inferiority. And it’s crucial that we develop in parallel, and accept that service users are not at the moment widely aware of or enthused by a new recovery context. So we need to be patient with each other, too. Most of us in the service still need it. This whole exercise is about reframing, not rejecting.

That’s why, in order for real change to take place, service users have to empower and partner each other meaningfully. These mutually empowered service users then have a foundation and strength able to support growth of equality with the service. Many feel this is unworkable, but ways are now being innovated to make this possible and they are succeeding.

One of the most popular lately is “peer mentoring”. This embodiment of mutuality. simply facilitates giving and receiving help and support with respect based on a shared experience. In the UK organisations like the Scottish Recovery Network and Recovery Devon produce similar definitions. Peer mentoring presumes empathy, which is vital to service user healing. As service users we can expect and experience much sympathy from staff and medical professionals but rarely, if ever, empathy. It’s not fair to expect from those whose experience does not include our own, it would be patronizing and disingenuous, at best contrived. From each other it is natural. Understanding through the personal experience of having “been there”, genuine engagement, sharing personal recovery experiences: these are all powerful ways service users can support and empower each other. Focusing on each person’s strengths and potential or actual wellness and promoting recovery through relationship and friendship, these are ways to make ourselves better and stronger, and able to participate fully as partners.

The next step might be peer mentoring programs where those with lived experience of mental illness mentor fellow service users. The two-way traffic here is simple and effective, as the specialist’s own recovery is strengthened through service. These mentors or peer support specialists help others recover through engagement, hope, and mutual relationship and friendship. And this helps the organization and system recover. Moving from “mental patient” to colleague redefines our roles and boundaries. Significantly, as staff work alongside people in recovery, staff find new hope.

It’s time there was more awareness of national and international developments in service user involvement. In England, Scotland, Northern Ireland, and abroad in Canada, the United States, New Zealand and many more practical application of the ideas of empowerment, partnership and the reality of recovery are often far advanced by comparison with our own. Delivering services around the needs and wants of service users; embedding service user involvement in mental health commissioning and whole service redesign; involving service users in setting goals and outcome measures and delivering user led services: all of these can be considered.

Empowerment is not just an idea, it is essential. Let’s see services empowered – self-empowered - to change. Let’s have real partnership, between agencies, and between services and its service users. Ideals may be comforting, and reality harsh, but we service users are no strangers to harsh realities. For some of us, it has formed almost all of our experience. Recovery is not just a model or a process or a concept or a practise or a context. Recovery does not happen just through services, as in the case of service users, but also to services. It is a necessity for service users and their best and most realistic hope for restored happiness and new wholeness. If we will take this journey together - the best hope for a new way or working and being with your service users - the opportunity to recover ourselves and each other is here. I know we can do it, and in fact today, being here, it’s clear we have already begun.

Mental Health Recovery Now by Jeremy Clarke is a powerful, practical, inspiring guide to recovering mental health from bipolar disorder, schizophrenia and other mental health conditions and disorders. Based on trainings to mental health services staff, supplemented by hands-on approaches to recovering mental health after illness, this exciting new development in attitudes to the successful transformation of mental health includes new and unusual articles and interviews with mental health professionals and service user mavericks. This book is essential to a more profound and penetrating understanding of what it is like to recover, what it means to recover and why recovery is necessary and indeed the right of mental health services users.

‘Recovery from “Recovery”’ by Jeremy Clarke

I am mentally ill. I’ve told myself this since the day I was diagnosed with bipolar disorder, almost ten years ago. All the conditioning from services and society, books, support, and the ‘net that I absorbed on mental illness I gradually owned, used and adopted. Indeed, I became it.

Now I am “recovering”. Truly, I’m in better shape than for some time. I have a diagnosis and treatment regimen and do include myself, usually, amongst the mentally ill, but I’m not as consumed with thoughts of mental illness, mental health and recovery. I‘m not in denial, nor resentful of my bipolar role, which can even have advantages; I just don’t recognise myself anymore as the mentally ill person I sold myself some years ago.

Recently a friend with a mental health diagnosis termed us both “disabled”. I recoiled. I may use such a self-description, if only out of habit or for mercenary ends. Many with a “mental illness” are recovering more from their treatment and such self-descriptions than anything else. A micro-industry has grown up around “recovery” but the need to recover is not automatically due to definitively real causes.

Recently it occurred to me that I might not be “mentally ill”; that my diagnosis might be incorrect (I ‘m not saying it is incorrect, only that it might be). Empirically “bipolar disorder” doesn’t even exist; it’s a convention of psychiatry. I’m therefore existentially ill. Genuine human mental disturbance and illness exist, and there has been positive movement in their treatment. However, without greater awareness, “recovery” and mental illness can be mutually reinforcing: the diagnosis creating the treatment that feeds the secondary illness that will necessitate recovery.

To reclaim our health and identity, the idea of “recovery” must eventually be dispensed with. “Recovery” reminds one of what one is recovering from, reinforcing the presence and reality of “mental illness”. It enables disablement.

Am I “recovered”? I’m better. I’ve “taken a journey”, from the edge of a cliff into a brick wall, under the wall, backwards through the exit into the light. I’ve accepted myself as much as I’m likely to; not much, but there again I can be an objectionable character! Still, I’ve defied and survived myself. I’ve seen myself, using the bipolar idea, as two halves of a soul locked in civil war, but there’s been only one of me all along, as stubborn and deluded as ever.

As a thought experiment, imagine that there is no “mental illness” or “recovery” needed from. Burdensome beliefs and conditionings, and even the most positive outcomes borne of them, are gone. What word sums up what someone mentally ill wants? I say, without hesitation, “Freedom!” From suffering, services, medication, self-labeling and stigma, and supremely from oneself as “mentally ill”, “disabled”.

This is why I want to and will completely “recover” who and what I’m. I’m not “disabled”, “mentally ill” or “recovering” or “recovered”. I know exactly who and what I am. I’m Jeremy. That’s enough.

Mental Health Recovery Now by Jeremy Clarke is a powerful, practical, inspiring guide to recovering mental health from bipolar disorder, schizophrenia and other mental health conditions and disorders. Based on trainings to mental health services staff, supplemented by hands-on approaches to recovering mental health after illness, this exciting new development in attitudes to the successful transformation of mental health includes new and unusual articles and interviews with mental health professionals and service user mavericks. This book is essential to a more profound and penetrating understanding of what it is like to recover, what it means to recover and why recovery is necessary and indeed the right of mental health services users.

Mental Health Recovery Now

Mental Health Recovery Now by Jeremy Clarke is a powerful, practical, inspiring guide to recovering mental health from bipolar disorder, schizophrenia and other mental health conditions and disorders. Based on trainings to mental health services staff, supplemented by hands-on approaches to recovering mental health after illness, this exciting new development in attitudes to the successful transformation of mental health includes new and unusual articles and interviews with mental health professionals and service user mavericks. This book is essential to a more profound and penetrating understanding of what it is like to recover, what it means to recover and why recovery is necessary and indeed the right of mental health services users.