Some thoughts about recovering from serious mental illness

The three “R”s that represent outcomes of treatment for mental illness (and specifically psychosis) are Response, Rehabilitation and Recovery. In this brief article I will review the three terms and illustrate their limitations in use. I will then look towards a holistic service for psychosis, central to which might be an alliance between users, carers and therapists with the vision to reform the present fragmented provision for psychosis.

Firstly the term recovery has the following meanings illustrated by persons who see themselves as recovering:

Pat Deegan (an author, a person diagnosed with schizophrenia, living in the USA)

“Recovery does not mean cure, it is a hopeful attitude, a way of approaching the day practitioners and carers working with people with mental illness need to:

  • see the person as more than the illness
  • what is the person recovering from? (for example; poverty, trauma, internal stigma, demoralisation)
  • recovery is a dimension beyond rehabilitation it may involve a kind of transformation
  • recovery is a unique (individual) journey
  • insightfulness of problems is not the same as accepting the illness diagnosis
  • recovery may not mean symptom free”

Internal factors

Cognitive (a person needs to be able to think towards taking control of their life, be aware of how their thinking about voices may be making them feel even worse instead of overcoming the illness), emotional (voice hearing may lead to feelings of hopelessness, depression and anxiety, help your self to work through these natural feelings and not give in), spiritual (despair is a natural state after hearing horrible voices but you may feel your way out of despair by realising the good nature of fellow sufferers who struggle with you and some people find it is immensely helpful to feel there is spiritual help available)

External factors

Participation (doing things with and or for other people takes you out of yourself and builds self esteem), self care (by caring for your self you will begin to feel you are worthwhile as a person), social relations,(when you start to be with others it is often the first step to overcoming isolation and another step to recovery) supports (you need others to have faith in you as well and help you on your way)

Process

Anguish (this comes from realising your despair in being ill and in need of help of many kinds), awakening (this comes from realising that you can take control and make a difference to yourself and others), insight (this comes from realising that you have problems from the voices or illness and that it is yourself that is going to need to do something), plan of change (this comes from realising that you will need to make changes and plan for those changes), commitment (this comes from realising that to make these changes towards recovery you need to stick with it and that there will be many more ups and downs but you can make it!)

If all this is started then it leads to well being and a sense of empowerment.

 

These authors make it clear that recovery is a process but unfortunately recovery might also be seen as an unobtainable end product. (see Whitwell, 1999, appendix 3b). I believe this misunderstanding comes from the use of the word “recovery”, a word used in the American literature on recovery from addictions for at least twenty years. A better word would be “recovering” as this implies an on going process and one in which it is much easier to see that it is a journey rather than an end point.

An example is taken from the experience of grief to illustrate the point. A person whose son has died might never truly “recover” from this, in the sense that nothing feels the same since that loss has occurred. However, having met such parents I know that some are experiencing “recovering”, as a process in which the loss is integrated into their lives, so much so that they may feel transformed and deepened in themselves, without denying the effect of the loss on their life.

Similarly, people who have been disabled by an injury can be seen to be recovering if they are accepting the problem and moving towards an active transformation of their life. This paradox of disablement/recovering is one that real people live with but one that is not part of the medical view of recovery as complete restoration.

Another possibly confusing factor is the difference between response to treatment and recovery. Response is the change that takes place from treatment (to either medication or psychosocial therapy), often required within six to eight weeks to be seen as effective. Psychologically, response is linked to the ideas of the sick role (Parsons, 1951), where by a sick person becomes a recipient of specific treatment for that sickness and therefore becomes a patient. The patient then complies with the treatment and adopts a strategy to get themselves better. In exchange for this legitimate sickness and compliance with treatment, the patient is allowed time away from normal duties to respond. The sick role breaks down in chronic conditions and in many areas of mental illness. This is because of the lack of clarity of the origin of the illness (the etiology); the specific markers of the illness (symptoms); early signs (prodromes) and the pattern of the illness (syndrome). There may be little acceptance (insight) to the doctor’s identification of the name of the illness (diagnosis). The patient is often seen as a passive recipient of treatment.
The contrasting concept of recovering is of a continuing process that may incorporate many responses to treatment that have been integrated by the person into their life journey and that it is ongoing.

The word coping similarly has difficulties because it may imply “mere coping”, only just making it, which is how some people feel but not what is implied by recovering, where the sense of clarity and purpose of living fully, despite disability is becoming clearer to the person.
The concept of rehabilitation is…”the process where a physically or psychiatrically disabled person is enabled to use their residual abilities to function effectively in as normal a social situation as possible” (Douglas Bennett, 1978, cited in Grove, 1999). This implies a big advance on institutional care buts seems to suggest a limit based on “their residual abilities” that is called “maintenance treatment” by Coleman and is very dependent on formal service provision.

Authors such as Helen Glover do not deny the value of medication or the aspects of the medical model that are useful but these are integrated into their recovering plan. For example, Helen Glover carries an ampoule of injectable anti-psychotic and a doctor’s note so that she can obtain medication when she knows she needs it. This is about taking control of the medical help rather than being controlled by it.

Such psychiatrists as Kingdon and Turkington (1994) in the UK advocate this integration of psychological and medical approaches. Gabbard and Kay (2001) in the USA go further and say that the one practitioner should provide both psychological and medical treatments in order to prevent the split in therapy between mind and body. This would have major implications for psychotherapy training for psychiatrists and prescribing training for other workers such as psychologists and nurses (Gournay and Gray, 2001).

One way to pull together the various strands of outcomes for psychosis could be the appointment of a specialist psychiatrists, practitioners and users in restorative psychiatry for psychosis. These posts would overlap and knit together the new services for psychosis, such as early interventions for first episode psychosis, mental health promotion to help prevent psychosis, assertive community treatment teams for those that have disengaged from CMHTs and lastly as recovery specialist in moving forward those people in rehabilitation teams.
Such persons would have to hold a hopeful attitude towards psychosis yet be pragmatic to use the best of what is available in medication, psychological methods, meaningful occupation, housing and social inclusion.

Such a person would use the stress-vulnerability model to underpin the work. This model is pragmatic, normalising and inclusive of contributions from all team members. It has face validity and as such is clear and understandable to practitioners, users, and carers alike.

The new psychosis service would offer medical, psychological and social therapies with the aim of offering as many people as possible meaningful occupation and the ability to gain from it. The person would be helped to live in decent accommodation in as much independence as possible. The different elements of the service would have permeable boundaries so that persons can move through them and to states of increasing independence.