How can self-help contribute in the field of psychological illnesses? 

Self-help is often born of sheer necessity: you suffer, you don’t receive the help you expect, and you are frustrated, depressed and isolated. In psychiatric terms one could allocate this to the simple term of negative symptoms. There is of course also the term, positive symptoms. In positive terms you can see self-help as an expression of the will to show individual responsibility and self-empowerment.

Today, I would like to focus on three specific issues: relatives of psychologically sick persons should organize themselves and make up groups together,

• because it helps them to overcome their own problems better,
• because it can help to improve care for the sick person and to generally safeguard the interests of those affected,
• because the interests of those affected and their families are swept under the carpet if they do not make themselves heard!

At the beginning: Frustration and suffering

If a person is psychologically ill, this means a tremendous upheaval for the family. The outbreak of the illness is often preceded by a long period during which everyone notices that something is not quite right, but nobody really knows what the matter is. Those affected often don’t want to consult a doctor or consultancy center. Instead, the relatives do this and then hear the sentence: “We can’t do anything, he’ll have to come here himself…“ But the person affected doesn’t go. In this situation, relatives have the feeling that’s something is happening, and they can only watch until things collapse. Voluntary or involuntary entry into a psychiatric clinic is often the end of such a story.

It takes a long time, often many years, until psychologically ill persons receive professional treatment. During this period, social relationships, work, apprenticeship or school have usually suffered immensely. And also, of course, the climate in the family – there is often an unbearable tension. This is the situation in which relatives meet doctors and other professional helpers for the first time. For them it is routine what the relative sees as a personal catastrophe. The entire situation is predestined to cause anger and misunderstanding. No one has time, no-one listens, no-one shares your suffering, no one explains, often you sense a reserved attitude among the professionals, and sometimes even direct and hurtful rejection.

This is just one typical situation. I could describe many similar ones in which relatives feel helpless and left alone. Some years ago I myself attended a relatives’ group which had just been set up at the University Psychiatry in Giessen. I remember very well: on the one hand I found it stressful to learn about so many sad fates. On the other hand I was able to describe my distress, to ask questions and received a lot of information. I know from many members of the group that it helped them a lot to handle their suffering and frustration. It is often so difficult to convey to outsiders what is happening in the family with the sick person; people see a strong young person and ask: “Why isn’t he working, why does he behave so strangely, somebody ought to do something…“. We’ve all heard such blanket recipes.

You don’t have to explain too much in the relatives’ group and you will find understanding and support. It can be expressed simply: the group does you good. But it would be absurd to enter such a group and expect to find the solution to all your problems. The effect – as with a lot of medicine – takes time until it works.

Relatives and professionals

Our conversation group takes place at the Center for Psychiatry of the University in Giessen. At the beginning of group sessions it is attended for three quarters of an hour by a doctor, a care provider and a social worker, and after this time the group is left to itself. Followers of “pure teaching“ will probably now object: what has that got to do with self-help if three professional run the session? The answer is: they do not run the session, everyone in the round is an equal participant.

The benefit for both sides is obvious:

• The relatives, and the professionals, always have competent conversation partners.
• Problems are immediately addressed, misunderstandings are clarified.
• Dialog is between partners on equal footing.

To me, this appears to be important: not only relatives benefit from this dialog, the professionals do as well: they find out a lot about the realities of family life in which psychologically sick persons live, and can use such experience to improve their own work. Misunderstandings and annoyance have little  chance of emerging, since they are discussed in the group and usually eliminated immediately. This creates trust. The relatives feel they are taken seriously, are better informed and accepted in their important role as reference person for the patient. New arrivals learn from the “older“ experienced ones and compare their own behavior. This reduces their feeling of insecurity. Therefore, it is a mutual give and take situation.

No one now disputes the significance of the social environment for avoiding relapses and for the recuperation of psychologically ill persons. However, there is often a lack of consequences from this finding. I would therefore request that professionals actively support the relatives. This is not a friendly gesture or an image improvement activity for a respective facility, but a professional requirement of modern clinical and community psychiatric work. The families, the social environment must always be included in concepts.

Good will alone does not suffice

The relatives’ group is the basis and core of the state associations of relatives and the federal association. These roots in the basis are very important. However, there are still not enough relatives’ groups and many simply flounder along after an active start: less and less people come in the course of time and in the end, the idea ends. I sometimes then hear from professionals or relatives: We’d like to do something, but they don’t want 3…..such expressions of giving up show a disregard for an important rule which applies not only for relatives, but for life in general: good will alone does not suffice. Groups are not a “sure-fire success“, you have to actively ensure continuation.

• Right from the start, you have to work to ensure the group remains appealing and always  draw attention to it to outsiders.
• In our experience, regular attendance by professionals, such as doctors, increases the appeal for the group.
• It is easier for a group of relatives to ““get going“ if they are supported by facilities or clinics, whether by staff or with material. I believe one should use such support.

Self-help can do more

So much for my remarks on relatives’ groups as the primordial cell of self-help, so to say.

Self-help can in fact do far more. It can not only unfurl an effect inwards but also an effect outwards. Because, at some time the weak points of psychiatric care will also be talked about in the relatives’ group. The complaints made by relatives are normally that there is no proper crisis service, that there is not enough outreaching and low-threshold support, and that there is no networking of support. Faults or misconduct in clinical or other facilities, administration centers and health funds are also talked about in the group. As such, the groups are an important means of quality assurance. This is a term everyone is aware of today, often accompanied by a bombastic, incomprehensible plethora of specialist vocabulary. Quality assurance people should be sent to our group – they would then receive information directly and in clear text concerning where there is a lack of quality.

A well functioning relatives’ group f can also be a building block to improve psychiatric and psychosocial care in the community or region. Why? Because it is different if Mr X or Ms Y complains somewhere or promotes something, or if a whole group speaks up and makes itself heard. A group carries more weight. Another benefit: if relatives organize themselves, they are able to safeguard their privacy and yet still make wishes and complaints public. Many relatives don’t speak up or defend themselves against faults because they don’t want to present themselves and their sick family member in public. Some are afraid to express criticism because they fear consequent disadvantages. “We depend on them..“, you often hear. In a group the individual can protect his privacy, and yet does not have to forego influence.

I find this a very important argument. Because one thing is clear:

• Only if relatives and, if possible, also psychologically sick persons express their criticism, wishes and requests loudly and clearly will there be any change in defects and deficiencies.

Always the same complaints...

In my  opinion the relatives’ groups should not only be seen as an internal event. It is also important to go one step further. I personally did this after having participated in the group meetings for some time and noticed that almost all other participants had the same complaints as me: not enough information, no support in crises, no one who cared for the patient after the stay in hospital.

Naive as I was, I thought I would merely have to explain this to the professionals and they would ensure that such deficits were rectified. Meanwhile I know: it’s not as easy as that. Meanwhile I also know how important it is not to leave this issue to professional helpers alone. And that is why I call for relatives to make their issues public, and to represent their cases in the political sector. Such commitment is extremely important and the more relatives who do this, the better.

What we need are relatives who become actively involved so that the situation improves both for them and the sick persons. “Not that as well“ will be the response of many. “I’ve got so much to do, where should I find the time and energy for things like that?“

I know it is not possible for each relative to become active themselves. But each relative can ensure that the voice of relatives is better heard by way of his membership in a group or state association, and help ensure our interests are better represented on a political level – in communities and districts, in states and via the federal association on a national level. Simply being a member helps, since it’s common knowledge: the larger a group or association is, the more influence it has and the better the representatives of this group can be heard.

We mustn’t sit back and think there are enough experts who know what has to be done. Experts speak on behalf of their professions or facilities, and their view is not always our opinion! We and the patients are “customers“ or „“users“, so to say, in the psychiatric support system, and the families are the most important community psychiatric facility, because over 60 per cent of chronically sick patients are looked after in and by their families. This gives us the right to get involved and to be heard!

Against the wall of silence

However: it is not only the lack of strength that makes relatives think twice about getting involved. Many do not want to “come out“ in public. The problem of stigmatization comes into play. It’s easier, for example, to admit to diabetes or rheumatism than it is to a psychological illness. Such illnesses are often treated as a secret issue, and there are reasons for this: you have to expect disadvantages if you deal with this issue openly! This risk cannot be simply argued away.

• But bear this in mind: you experience disadvantages if you do not deal with the issue openly! And seen as a whole, I believe there are more disadvantages if you pull a wall of silence up around everything which involves psychological illness.

Because the outcome of such a game of hide-and-seek is the following: the public will not become aware of our problems, our wishes and interests will not be considered, jobs and funds will not be approved, or will be saved. Our silence will ensure that exactly those conditions about which we complain, will continue to exist. This is something we should not, and must not, allow to happen.

Therefore I request relatives to make that first step and to join a group (or to set up a new group) and to become part of the respective state associations. In this way you can indeed do something for yourself as well as for your sick relatives. I would like to encourage you to get involved , and remind you of the wonderful words of Erich Kästner:

Action speaks louder than words!