Recovery is possible for everyone?

Rachel Perkins (Independent Consultant and Trainer, London, UK)
Julie Repper (Nottingham Recovery Centre, Nottingham, UK)

Mental Health and Social Inclusion

ISSN: 2042-8308

Article publication date: 11 May 2015

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Citation

Perkins, R. and Repper, J. (2015), "Recovery is possible for everyone?", Mental Health and Social Inclusion, Vol. 19 No. 2. https://doi.org/10.1108/MHSI-03-2015-0006

Publisher

:

Emerald Group Publishing Limited


Recovery is possible for everyone?

Article Type: Editorial From: Mental Health and Social Inclusion, Volume 19, Issue 2.

Everywhere you look in mental health services, people are talking about “recovery”. However, it is not uncommon to hear it said that ‘recovery is not “relevant” outside the narrow confines of general adult mental health services: to children and young people, older people, people with “severe and enduring” mental health problems, people with dementia, people who “lack insight” into their condition […].

Generally these assertions reflect confusion and disagreement over what is meant by the term “recovery”.

Often, the term recovery is taken to mean “recovering FROM”: recovery as “cure”, getting rid of problems, getting better. In this interpretation it is clearly irrelevant for anyone with ongoing problems, progressive conditions like dementia, or those who consider there to have been nothing wrong with them in the first place (unless or until they gain “insight”). Alternatively, the term recovery is taken to mean “Recovering”: getting back to how things used to be, regaining the life you have lost, “turning the clock back”. In this interpretation it lacks relevance for those who never had much in the first place, people with life-long problems or challenges that started when they were very young and had not yet found their way in life.

Both of these interpretations of the word recovery reflect the traditional view of the role of the mental health professional as “putting right that which has gone wrong”. It is perhaps not surprising that mental health workers understand the concept within a framework with which they are familiar, and people using services have sometimes rejected the term because of this construction:

[…] we knew some service users didn’t like the word. “Recovery takes you back to where you were, but my experience transformed me.” “I’ll always have mental health problems so I’ll never recover.” “I don’t believe I had an illness but recovery implies I did have one.” “I don’t see my madness as undesirable, so what is it I need to recover from?”. “To recover means to cover up again, but I don’t want to cover up my distress” (O’Hagan, 2002, p. 16).

However, the conceptualisation of recovery as “getting better” or “going back to how things were before” is a long way from the ideas expressed by those who originally talked of recovery in the mental health arena. Ideas about recovery in mental health originated from those who had themselves faced the challenge of rebuilding a life with a diagnosis of mental health challenges. In 1988, Pat Deegan talked about recovery as:

[…] the lived or real life experience of people as they accept and overcome the challenge of the disability. They experience themselves as recovering a new sense of self and of purpose within and beyond the limits of the disability (Deegan, 1988, p. 12).

In 1998, the New Zealand Mental Health Commission talked about recovery as living well in the presence or absence of mental illness and emphasized not just the individual but the social nature of recovery: the individual and social processes that ensure people with mental health problems can live well (O’Hagan, 2002).

Probably the most commonly used definition, and that which is used in the UK Mental Health Strategy (Department of Health, 2009, 2011), is the definition offered by Bill Anthony in 1993:

[…] a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life (Anthony, 1993, p. 16).

In these conceptualisations, recovery is about “recovering a valued life” rather than “recovering from an illness” and is clearly not about “going back to how things were before” but growing and moving forward, gaining strength as a result of one’s experiences. If recovery is understood in this way it is equally relevant across the mental health spectrum, and maybe the adult mental health arena has much to learn from other areas.

An idea for all ages

While the term “recovery” is not often used in relation to young people, the underlying principles of the recovery approach are equally applicable (Department of Health, 2011). Indeed, young people in a London adolescent unit seemed very comfortable with the idea:

Recovery is a personal process. Recovery is not always a cure. I think recovery is about how you try to tackle the bad effects of experience mental health problems. When things go wrong if we have hope we can change and develop and grow (Sadia, 14).

Recovery to me is being able to live around other people and not feel judged or compelled to behave a certain way. Recovery to me is being able to be who you really are without feeling ashamed or embarrassed […] you don’t have to completely defeat your illness you just have to learn to live with it. And above all just remember that you DO matter and you ARE worth it! (Nancy, 17).

To me recovery means learning to cope with the difficulties that you have […] I don’t think recovery means that you are no longer ill it just means you have learned to live with your illness and have found ways to live a good and enjoyable life (Megan, 17, cited by Perkins, 2015, p. 4).

However, one young woman was worried about the idea of recovery as “going back to how things were before”. She said:

Sometimes it can be a different experience to teenagers recovering than it is to adults. This is because teenagers are in a very different stage of life; they are still growing and developing, becoming the adults that they want to be. Whereas an adult may already be confident in who they are, a teenager is still discovering, exploring […] you may come out a different person to how they started off (Hannah, 15, cited in Perkins, 2015, p. 5).

But perhaps, if we take the original meaning of recovery, it is not so very different. Everyone who is diagnosed with mental health problems faces the challenge of growing within and beyond what has happened to them. Everyone is “growing and developing”, “exploring and discovering” […] and everyone comes out “a different person to how they started off”. The process of “Recovery” is really a process of “Discovery”:

You have the wondrously terrifying task of becoming who you are called to be.[…] Your life and dreams may have been shattered – but from such ruins you can build a new life full of value and purpose (Deegan, 1993, p. 10).

At the other end of the age spectrum, the original conception of recovery is equally relevant, although the process is often made more challenging by physical health problems, loss of valued roles, the death of friends and loved ones and ageist assumptions about the value of older people and the “burden” they impose on families and communities.

But what about people living with a diagnosis of dementia?

Some may shy away from ideas about “recovery” in relation to dementia because it gives “false hope” of a “cure”, but preferred terms may be less important than the values they support (Hill et al., 2010) and in its original meaning, recovery was not about cure but about living well:

Even for conditions where there is as yet no cure, as with dementia, improvements in care and treatment are achievable […].” Recovery’ and well-being approaches […] are equally applicable to older people. “Recovery” does not imply “cure”, but builds on the personal strengths and resilience of an individual […] Recovery is about the development of coping skills, and about social inclusion, making it possible for people to have quality of life and a degree of independence and choice, even those with the most enduring and disabling conditions.” (Social Care Institute of Excellence, 2006, pp. 19-20)

Nowhere are negative images more evident than in relation to those with a diagnosis of dementia, with popular ideas about “living death”. A diagnosis of dementia is certainly devastating and life changing, but many people living with the diagnosis and their families have shown that a decent life is possible:

You’ve got it, it’s gonna kill you, but not today, so let’s get on with it today and let’s get today’s enjoyment or whatever you like, and don’t think about what’s going to happen tomorrow or the next day. Live today. As I say although you’ve got it, it hasn’t killed you so get on and enjoy (cited in Pratt and Wilkinson, 2001, p. 86).

I’m living with Dementia, not dying from Dementia (Ashley, cited in Care Services Improvement Partnership, 2007, p. 11).

The opportunity to “continue to be me” is of the essence in living well with dementia (Daley et al., 2012):

I’m still me. My memory may not be as good as it was but it doesn’t stop me from being me (cited in Care Services Improvement Partnership, 2007, p. 9).

However, the opportunity to do this is often limited by attitudes, barriers and failure to provide the support people need to maintain both a sense of who they are and the activities they value:

Support is the key to me leading as normal a life as possible. People knowing and treating me as the person I still am. Giving me room to live (cited in Care Services Improvement Partnership, 2007, p. 9).

Some of the initiatives in “person-centred planning” and the use of a social model of disability to understand the challenges people face and reduce the barriers to participation (Care Services Improvement Partnership, 2007) may hold lessons for younger adults with mental health problems. Initiatives to create “dementia friendly communities” may provide models from which the the functional mental health world might learn (Local Government Association/Innovations in Dementia, 2012).

Beyond mental health: physical illness and impairment

Ideas about recovery also have relevance beyond the mental health arena to people with acquired physical impairments and long term health conditions. For people facing such challenges, ideas about “cure” and “going back to how things were before” are not relevant, but a recovery vision of “living well with”, “recovering a new sense of self and of purpose within and beyond the limits of the disability” are equally pertinent. Patricia Deegan drew such parallels in 1988:

At a young age we had both experienced a catastrophic shattering of our world, hopes and dreams. He had broken his neck and was paralyzed and I was diagnosed as being schizophrenic […] Just days earlier we knew ourselves as young people with exciting futures, and then everything collapsed around us. As teenagers we were told that we would be “sick” or “disabled” for the rest of our lives (Deegan, 1988, p. 11).

For those with life-long physical/sensory impairments or learning disabilities, like children and adolescents with a diagnosis of mental health problems, the concept of “recovering” a sense of self and purpose may not be relevant. However the process of “discovering and exploring”, “growing and developing”, “becoming the adults that they want to be” is equally pertinent to everyone facing mental or physical health challenges. In the words of the United Nations Convention on the Rights of Disabled People (which includes people with mental health conditions) we need to move:

[…] from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society (United Nations, 2006, p. 1).

A common human experience

Beyond the health and social care arena, everyone at some stage in their lives faces traumatic and life-changing experiences that “knock the bottom out of our world”. This may be the end of a relationship; the death or serious illness/injury of someone we love; losing a job or failing a key examination; being the victim of abuse or crime; being convicted of a crime; fleeing war or persecution and seeking asylum in another country […] Clinical ideas about cure have no place in relation to such vicissitudes of life, and it is certainly not possible to “turn the clock back” to how things were before, but the challenge of recovery is very much present: “accepting and overcoming what has happened”, “recovering a new sense of self and of purpose”.

Because all people […] experience the catastrophes of life […] the challenge of recovery must be faced. Successful recovery from a catastrophe does not change the fact that the experience has occurred, that the effects are still present, and that one’s life has changed forever. Successful recovery does mean that the person has changed, and that the meaning of these facts to the person has therefore changed. They are no longer the primary focus of one’s life. The person moves on to other interests and activities (Anthony, 1993, p. 17).

Not only is recovery possible for everyone, it breaks down the “them” and “us” divide: the challenge of recovery is faced by everyone at some time in our lives. In the words of Bill Anthony (1993), recovery is a truly unifying human experience.

Rachel Perkins and Julie Repper

References

Anthony, W.A. (1993), “Recovery from mental illness: the guiding vision of the mental health service system in the 1990s”, Psychosocial Rehabilitation Journal, Vol. 16 No. 4, pp. 11-23

Care Services Improvement Partnership (2007), Strengthening the Involvement of People with Dementia, CSIP Older Peoples Mental Health Programme, London

Daley, S., Newton, D., Slade, M., Murray, J. and Banerjee, S. (2012), “Development of a framework for recovery in older people with mental disorder”, International Journal of Geriatric Psychiatry, Vol. 28, pp. 522-29

Deegan, P.E. (1988), “Recovery: the lived experience of rehabilitation”, Psychosocial Rehabilitation Journal, Vol. 9 No. 4, pp. 11-19

Deegan, P.E. (1993), “Recovering our sense of value after being labeled mentally ill”, Journal of Psychosocial Nursing and Mental Health Services, Vol. 31 No. 4, pp. 7-11

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O’Hagan, M. (2002), Living Well, Openmind, Vol. 118, Nov/Dec, pp. 16-17

Perkins, R. (2015), Is Recovery Possible for everyone? Paper presented at the Implementing Recovery through Organisational Change Annual Conference, East Midlands Conference Centre, Nottingham, 13 February, available at: www.imroc.org/wp-content/uploads/Rachel-Perkins.pdf (accessed 27 February 2015).

Pratt, R. and Wilkinson, H. (2001), Tell me the Truth: The Effect of Being told the Diagnosis of Dementia from the Perspective of the Person with Dementia, Mental; Health Foundation, London

Social Care Institute for Excellence (2006), Assessing the Mental Health Needs of Older People, Social Care Institute for Excellence, London

United Nations (2006), “Convention on the rights of disabled people”, available at: www.un.org/disabilities/default.asp?id=150 (accessed on 27 February 2015).

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