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| Recovery Series Booklet 1 |
PEOPLE WITH MENTAL DISTRESSES DO RECOVER
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But what helps?
For years, psychiatry has been sending out messages of hopelessness about the chances of recovering from many mental disorders. Certain diagnoses have usually been associated with a lifetime of illness and disability. This view assumes that severe mental distresses are not something person has, but it is something person is - as if every part of the person has been taken over by the condition. As if the person's whole identity has been occupied by an alien being, that is completely uncontrollable. However, psychiatry and the mental health system is now beginning to change, reflecting research that shows us that people do recover, even from very severe mental disorders.There is hardly any instance in which it can be said that the person, who shows signs of severe mental disturbance, is wholly or completely disturbed. There are always parts of the personality and remain intact and develop independently of the "illness". Many people develop ways of coping with their symptoms and are able to live self-reliant and wholly meaningful lives. Many people, with the right support and treatment, develop beyond what had earlier been expected from a person with a "chronic illness".
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Good reasons for optimism
Schizophrenia is the diagnosis most consistently associated with a chronic lifelong illness. In certain psychiatric circles patients who recover after having been diagnosed schizophrenic, are thought to have been given the wrong initial diagnosis! For if they had had schizophrenia then they couldn't have otherwise recovered! Today several studies indicate that between half and two thirds of all people diagnosed as having schizophrenia do recover - are
'symptom free' - sometimes with medicines and sometimes without them. So, it is certain that patients diagnosed with other diagnoses of 'mental illness' and emotional distress - bipolar disorder, depression, anxiety and so on
- can also recover.
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Recovering
To recover can mean different things in contemporary research and among people themselves. Recovery is not regarded as an endpoint but as a process, the reassertion of an independent relationship to the self and to one's own life.
Some patients recover socially, though still continue to experience certain symptoms which could be regarded as a mental disorder. Perhaps they still hear voices or have visions, but they find they are not troubled by them or maybe not troubled to the same extent or in the same manner as before. They have found a way to cope with their voices. They may remain in contact with mental health services for support and received medication in low doses. They may still receive some
support from the social services. But this does not prevent them from living a satisfactory life, having friends, studying and perhaps having a job or meaningful employment.
Many patients recover totally - that is they no longer experience any symptoms of disorder or distress and do not receive any treatment. They live an ordinary life and no longer need to turn to psychiatry or the social services for help to deal with their mental or emotional problems. Recovery seems to be a real possibility, even after years of having a severe mental disorder.
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What helps?
Many of the treatment interventions psychiatry can offer do bring some relief. But they can also give rise to painful experiences. The same can be said about interventions by the social services. Some patients recover thanks to specialised support, counselling, psychotherapy and/or medication. But other studies indicate that a proportion of people who recover from, for example, schizophrenia, have not been helped to any appreciable extent by these forms of intervention, seen over the long-term.
"In Vermont, rehabilitation was offered to a group of patients who remained behind in the mental hospital when the other patients with a better prognosis were discharged. They were considered the "hopeless cases". An effort was nevertheless made on their behalf. The year was 1956. 30 years later, 82% of those who had been diagnosed as having schizophrenia were living independent lives in the community. The majority had formed friendship ties with the care givers, who had helped them to make a place for themselves in the local community".
(Harding et al 1987)
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Many people recover! How is this possible?
There is a lot we know today about what the people, who have recovered, say has helped them on their way. Significantly, there doesn't seem to be a single way, any one kind of intervention that suits
everyone. On the contrary the crucial factor seems to be that they have each found their own way. They found the strength of will, determination and support they needed to find a way that works and
feels best for them themselves. The right response from the start is vital.Today, there is considerable evidence to show that the right response from the start can interrupt the illness at an early
stage or ameliorate its course. By the right response, we mean that mental health staff, carers, loved ones and other people experiencing distresses in supportive relationships are sensitive to the
person's own way of understanding the problem. It is important that help is provided as far as possible in the individual's home and community setting, that the time spent in institutional care is as
short as possible and that the lowest possible dosage of medication is prescribed.
The individual's social network, family, friends, relatives, may also play an important role, both on their own and
together in partnership with psychiatry and the social services. There is no reason why mental problems should result in social isolation. Early intervention is important. But even people with a long
history of mental disorder do recover. Research has shown that after a number of years painful experiences tend to stabilise. Individual people in their surroundings develop ways to cope with
'symptoms' in order to live as good a life as possible. Individuals become independent in relation to the illness. A process of recovery has begun.
Contrary to common belief, people with severe mental
disorders are seldom completely unaware of their difficulties. Often they know that they "shouldn't" be hearing voices, that they "shouldn't" be acting in a certain way, or that possibly not everyone
is against them, not everyone wants to get at them. People cannot be reduced to their symptoms and diagnoses. Like everyone else, those who experience mental distresses also have many other sides to
their personality, other interests, areas of knowledge, abilities, wants, hopes and dreams...
There are many areas of the personality that are not affected by the person's distressing experiences or delusions. People seek solutions to their problems, solutions that others might perceive as symptoms. Some people might feel that it is less distressing to isolate themselves rather than endure the insecurity and anxiety they experience when meeting other people. So everyone's route to Recovery
- a better quality of life - is different. And this goes for ALL human beings, because we all have times of change and difficulty, when our self esteem and our ability to maintain wellness and good quality of life are challenged. And there are hundreds of "wellness tools" available to all of us
- safe, simple, practical ways, in which we can maintain or improve our wellbeing if we choose.
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Hope
For many people with a mental disorder, one crucial factor for their recovery is Hope. Hope for a different life in the future. To hope might seem unrealistic, when the strong message is often given that people with problems, especially intense and very uncomfortable ones, have to accept being mentally distressed for the rest of their lives. That they shouldn't expect to work again, that they are going to be in need of help, that there relationships are going to be difficult. But none of these messages is likely to be true. Hope generates the will to change. And this, under the right circumstances and with the right support, can open up a range of possibilities.At first, the changes are probably only slight. Small changes in daily routines, so small and other people may not even notice them. Nevertheless, to the people with mental distresses, these changes prove that there is much in their situation that can be different. They are able to direct their own lives. They are not completely helpless in dealing with personal problems. They can hope to regain power and control over their lives. It is the small changes that keep hope alive and strengthen that part of the person struggling to create a better life. Some of the people recovering from mental disorders talk about having made a decision. Perhaps the decision was "only" to ignore certain symptoms. Consequently, although they still have uncomfortable or bizarre experiences, these no longer play such a dominant role in their lives.
Or they might have decided to do something different, to take a risk and see if they can handle being amongst "normal" people - to dare to take risks even though progress might be only one small step at a time. Hope can be owned and passed on by everyone in the mental health system. But it is given and received most profoundly from other people who are in recovery themselves. Those who are starting their recovery journeys say that meeting with others, who have had the same or similar experiences and who have recovered, grown and prospered as people, are the most inspiring sources of hope. These people are Experts by Experience, who have walked the walk and now have wisdom to give to others on their journey. And we are all capable of such inspiration ourselves whether we are paid professionals, carers, managers, supporters or just people!
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Other people
Other people play an important role in the recovery process. They have support, wisdom, ideas, hope, friendship, laughter and much more to offer. They can also keep hope alive, when the distressed person has lost all hope and just wants to give up, by being there for the other person. Simply being there - without insisting that the person who is currently in a bad way should pull themselves together, get on with their life, or get active. It means being there for the other person and accepting that they have difficulties but also strengths and resources. Family members, who persevere and do not abandoned their loved ones, stand for continuity. They are a strong thread in the other person's life. They have shared times of joy and times of sorrow and this enables them to help the person to link together different parts of his or her personal history.Close family members can also stand for all-important material and practical support, both in daily life and times of crisis. Professional helpers in psychiatry and social services may also be a contributing factor in recovery. But people who have recovered seldom described their way back to an independent life as a result of a specific treatment intervention. What has mattered is often something else
- authentic encounters. When professional helpers dare to cross the imaginary line separating them from their patients and relate as human beings, both on a journey through life, open to the individual's personal struggle, to the person's life.
When they expressed interest concerning such simple questions as "when you help yourself, what do you usually do?", or "What do you want to do in your life?", when they risk putting aside traditional institutional rules and routines. When they have the courage to offer something else besides treatment and supportive measures. When they can accept what the distressed person has to give as well as receive.
"If I have to look for what I call a lifeline, then I guess it's my mum - and our clashes. She has never given up, even when I have screamed at her. Despite all the traumatic experiences we had earlier, she never gave up. That is what's meant the most".
People, who have recovered, stress the importance of being part of a mutual relationship with one or more others. To no longer be a person who is always on the receiving end. To experience what it is like to be givers well as receivers. Just to give something to someone else. This is a tremendous step on the road towards recovery. There is a great risk that what the professionals look for most of all is progress defined in terms of the treatment plan and are only willing to acknowledge
"the healthy side", disregarding a person's suffering and their distressed side. But both sides go into making up the whole individual. And there are many others - fellow patients, friends and brief acquaintances
- who can contribute to the recovery process. Recovery invites new mutually supportive relationships with all these.
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Medication
For many patients medication is important. But equally, for many of them, having to take the drugs prescribed by psychiatrists, is a frightening experience. Sometimes they are given very high doses without explanation. Seldom patients are fully informed about what effects the drugs are supposed to have and what side-effects they could expect. Some are given medicine, and only medicine. And they are not given medicine as part of a personal relationship with a doctor or nurse. They are rather given medicine as a substitute for a personal relationship. And in the worst case, medication is a battlefield where patient and psychiatrists are fighting against each other.Sometimes administering the medicine is reduced to a routine act, which gives the patient no chance to discuss the possibility of gradually reducing the dosage. An injection every third week, and that's that. People who have recovered also talk about the kinds of drugs that have helped them regain control over their lives. Here the medication is often prescribed as part of a joint effort on the part of clinical staff and the patient
- a real partnership. According to patient's stories, medication can be seen as something more than simply chemical substance introduced into the body. Medication works best when it is used in a personal context, when the people who take the medicines are informed, involved and have control.
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Good places
The recovery process needs support. This support can be found in places where individuals feel accepted, both of their problems and for their dreams and personal resources too. Social services and psychiatry can provide good places: clubs and meeting places, supported housing, occupational and recreational opportunities, to get people going again. They can support the development of self-help groups, which are a great source for recovery. And there are places that are open to everyone, such as community colleges and voluntary organisations. Good places are places where a person can be one way and then the other. They can be themselves.They are places where a person is not regarded as
"mentally disturbed". Nor do they feel obliged in these places to always act "healthy" - and only "healthy" - secretly hiding their suffering from the others.
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The recovery process
Recovery is not a straightforward process. Not everything can be accomplished in one day. It is about the recapturing of oneself - a painful process often marked by two steps forward and one step back. Long periods when nothing at all seems to happen then suddenly interrupted by a leap forward. There may be more going on under the surface during these long periods than meets the eye. It may be a time when a person composes themselves and prepares themselves for the next step. Training for it, working it out and preparing to try new ways of being and behaving. Sometimes this training happens when people are on their own. At other times they might be in the company of others. But in either case the fear of falling is often very much present. Support is crucial here. Many people who have or have had mental distresses talk about a deep sense of loneliness. Few people, if anyone, have wanted to, or been able to be with them during difficult episodes. Like all human beings, people with distresses are searching for a meaning behind what they have experienced in the past or are still going through.
It is important to find meaning, an explanation of why one's life has turned out the way it has. But it is also important to find out what can be done to change. It is not a question of finding a "one and only truth" in life
- just a meaning for yourself. What has meaning to one person may not have meaning to another. But finding a meaning, an explanation that bears up under pressure, seems to have the power of truth and that is what helps. Distressed people, who recover, have different explanations for what has happened to them and how they have overcome it.
"We do remember that even when we had given up, there were those who loved us and did not give up. They did not abandon us. They were powerless to change us and they could not make us better. They could not climb the mountain for us but they were willing to suffer with us. They did not overwhelm us with their optimistic plans for the future, but they remained hopeful despite the odds. Their love for us was like a constant invitation, calling us forward to be something more than all of this self-pity and despair. The miracle is gradually I began to hear and respond to this loving invitation."
- Patricia Deegan, 1988
There are many explanations - some refer to talk about their childhood, others about deep psychotherapeutic revelations, others talk about the harm caused by medication, about how they have been disempowered or even abused emotionally by the system, still others are pleased to have eventually found "the right medication" or to have found a way of living without it. For still others, the thread is a vital personal or intimate relationship and how the support of important people has led to the turning point. Although one explanation often dominates, it is not uncommon for people to combine explanations. What they all have in common is that they have succeeded in finding meaning in their lives and meaning to life.
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What can be done?
What we have learned is that we have to expand our knowledge. We must all do this together - in partnership - with people who have experienced mental distresses. No person is only or completely mentally disturbed
- no one is ill all of the time. Most patients recover. By realising this, we are laying the foundations for being of some help in the recovery process of others - that is by our continuing to hope. Hope is essential to persons with mental problems. It is also important for people in the person's surroundings to be able to convey their own hope.Revealing that they are people who refuse to give up, especially when a sense of helplessness is most overwhelming. People with mental distresses often develop many of their own strategies for coping with their symptoms. It can be important to them that their efforts are recognised and they get support to improve them, but it is also important that they learn from other people strategies. Sharing ideas is a powerful route to recovery. Using the expertise we all have learned throughout our lives to keep well and learning more wellness tools from others is important too. Nevertheless, each person has to find his or her own way and his or her own way of understanding.
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Responsibility for psychiatric care
It is the responsibility of psychiatric care, local authorities and social services, to work together to develop a wide variety of activities, services and opportunities - a range of activities, treatment interventions and support measures, from which the individual can choose whatever works best for them.
Currently the range is far from wide. Most people don't know where or how to learn about recovery and wellness. If they really want to succeed, it is the responsibility of psychiatry and social services to make it possible for staff to establish long-term relationships with patients.Being a mental health worker is not
"a technical job" but a human one. It should be borne in mind that people who have recovered from mental disorders seldom attach any importance to specific forms of treatment or support measures, the systems or therapeutic approaches they have experienced. Instead they talk about the people, the individuals, who have taken their side in their struggle.
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With acknowledgement to Alain Topor
Produced in partnership with
Wirral Department of Adult Social Services Published September 2007
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Wirral Carers