Out of the Box
When the 2006 Thinking about Medication group came to an end, some members were still weighing up the pros and cons of coming off medication and preparing to start a withdrawal process, whilst others were in the midst of reducing their medication; many of these people expressed a wish to meet up on a regular basis to obtain and provide each other with support. After a couple of meetings of a planning group arranged on the initiative of group members, Marese Hudson and Guy Holmes were asked to facilitate Out of the Box, a fortnightly support group. Several Thinking about Medication group members took responsibility for organising this group, including coming up with the name and finding and booking a venue (a room in the nurse training block of the general hospital). We collectively devised a flyer that was sent to everyone who had come on the 2006 course. It was agreed that the format would follow the ‘model railway’ facilitation style described in Psychology in the Real World, whereby each member would be given an opportunity in turn to talk about ‘how things were going for them’, both generally as well as regarding their medication. Everyone was given a chance at each meeting to give an account of their experiences over the previous couple of weeks, especially regarding any impacts on them of reducing medication, and was able to receive support and advice from other group members.
Like many support groups the group was set up with no end date. This was because no one knew how long they might need the group for. Out of the Box was a relatively small group: 8 people signed up but several were unable to attend as regularly as they had hoped. After 9 months some members felt they had got as much as might realistically be expected from the group, others had become interested in seeking alternative means of support, whilst for some the practicalities of attendance had become difficult (e.g. one member had a baby): the decision was then taken to bring the group to a close.
Nicki Evans' account of the group below is an updated version of a chapter in Psychology in the Real World and gives a good idea of what Out of the Box was like for participants.
Out of the Box
By Nicki Evans
After the Thinking about Medication group at the Gateway came to an end it was clear that some people in the group still felt a need for support and that they would benefit from further meeting to discuss medication matters. Some wanted to change, reduce or completely come off their medication and wanted support regarding any problems that might be associated with this. To me the Thinking about Medication sessions, although crucial, were quite reserved and formal, and people perhaps held back from expressing some things so there was a need for a more informal, less structured group. Because the support is simply not out there, there appears a huge gap between taking medication pushed by the medical profession and struggling alone to come off or reduce medication (which is often met with disapproval from professionals). I have discovered that doctors’ views and ideas differ and some are more open about the troublesome side effects of medication and withdrawal than others. However, I am sure I am not alone in experiencing withdrawal reactions being seen by professionals as ‘the illness returning or getting worse’ and being told ‘you’re relapsing’. A vicious circle can ensue and a feeling of being unable to stand your ground as your mental state feels worse and you end up being medicated again.
The psychological issues involved in taking illegal and prescribed psychiatric drugs I think can be similar. For example, both can be taken to alleviate the effects of distressing life events – to feel oblivious or high for a while or to simply numb the pain. The side effects when coming off many illegal drugs are similar yet less severe than for prescribed psychiatric drugs. There is well-established help for people to come off illegal substances and yet, apart from Out of the Box, there is no help that I have been aware of for coming off prescribed medication.
The Out of the Box group met fortnightly for nine months, in the nurses training department in the general hospital. There were a smaller number of us than at the Thinking about Medication group, usually between about five and eight. I had trouble attending all the sessions of Out of the Box due to the fact I was an inpatient at the local psychiatric hospital at the time. Regarding attending the group, I received similar reactions from mental health professionals as I had a few years later when I co-facilitated the first Writing Group: comments like, ‘What is this group you’re doing now?’ ‘What’s been put in your head now?’ ‘No doubt you’re going along to be told to stop taking your medication’. In some people’s eyes there was a conflict between being in hospital and attending this group, and when I talked about the group I was faced with direct criticism and sarcasm of Guy and his general attitudes. My response was that the group was about accessing information and general discussion of medication matters, and it might be deemed ‘anti-medication’ by people who never want to discuss the downsides or see medication from both a negative and positive point of view, but at no point had Guy or Marese (as group facilitators) said people should stop taking their medication. People were attending to discuss their experiences (good and bad) of medication, to think for themselves, make their own minds up and make choices. A lot were reducing or trying to come off their medication, but not all. I made the point that attending the group at least got me out of bed and out of the hospital, which was not usually the case when I’m in hospital.
Eventually the comments stopped. At the end of the day if I’m going to do something I do it; if people try to stop me I make it my mission to defy them further. Not all hospital staff were negative about the group and me attending; I was surprised by some student nurses’ comments when I chatted about medication and the group and was met with genuine interest and questions on my thoughts on matters about medication. At the time I put this down to them not having certain ideas drilled into their minds yet, but have since come to wonder whether they were naive or more open to different opinions. Would their attitudes eventually change or are a more open-minded generation of nurses seeing things differently?
Out of the Box was more personal than Thinking about Medication due to the more informal nature of the meetings. At each meeting we took turns to describe how we were doing both in terms of medication and in a more general sense. Thus the group operated as a support group, which felt more intimate and meaningful and I found myself able to openly discuss things I would normally not talk of.
Discussions in the group were sometimes profoundly personal and at times people became very emotional, myself included. I was infuriated with my personal situation of being stuck in hospital due to accommodation difficulties. Before the group the very thought of crying in front of people horrified me, but when I got upset I actually felt okay. I knew that I would not be judged for it or secretly deemed unstable or ‘a mess’. To be met with reassurance and kindness from all in the room was liberating and touching. To feel no shame for once and to not get hysterical (because getting upset can be uncomfortable for others and ignored resulting in a fuelling of the despair) was important to me. Because you feel alone (maybe you literally are) in psychiatric hospital it is commonplace for people to cry and for it to be ignored. For me this leads to a feeling of hopelessness, which in turn leads to immense negativity. This could easily be prevented given a change of attitudes and practices in mental health settings, but hospital nurses are simply too busy to provide individual attention. I therefore found the group not only a good opportunity for me to get out, but an emotionally supportive experience, as well as it being informative and offering an opportunity to learn from others’ experiences. I was also able to make friends, something I’ve never been good at.
Various discussions in the group led me to realise that years of constant swapping and changing of combinations of drugs might have been messing me up – I have sometimes wondered how I could think straight whilst taking anti-psychotics, anti-depressants and other tranquillizers at the same time. Certainly there were times when I could not think clearly, but I have continued to take medications. The professional staff at the hospital were wrong to worry that I would be told or persuaded to stop taking psychiatric drugs. I continued to take medication for a number of years after the Thinking about Medication and Out of the Box groups and continued to think about the prospect of gradually reducing them with the aim of coming off and I know this is something I have avoided. If I’m honest, I perhaps have taken them for the ‘wrong’ reasons – they are something to lean on, an imaginary crutch that I dare not lose grip of for if I eventually became medication ‘free’ I would also in a sense be ‘alone’.
I found Out of the Box unrestrained yet with structure, creating a place where members were able to say exactly what they felt due to the sense of warmth, understanding and compassion in the room. Such experiences often seem lacking in mental health services. The reasons for this are not always to do with negative attitudes: it can be due to staffing levels and paper work giving insufficient time for clinicians to provide individual attention except at allocated, time-limited periods in hospital or in the community. Sometimes there is a necessity for distance – it does not mean mental health professionals are without humanity. But to go to a group where the overall attitude from all is patience, interest and neither misplaced concern or over clinical thinking but a happy ‘human’ medium was, even if it helped just one person, in my eyes a great success. In my opinion this type of group is necessary for so many people, myself included. I have held a long wish for it to run again, not just to get things from attending but to pass on my experience of things: I am as unique as any other that might attend and, although not medically trained, feel I have something to contribute to a support group such as this. I feel the general concept of the group was and still is a necessity for so many people as there is much to be debated and thought about regarding medication.
Six years on from the first Thinking about Medication group and subsequent Out Of The Box Group much has changed for me when it comes to medication. After a gradual and often emotionally turbulent reduction of medication I no longer take any type of psychiatric drug, with the last and final drug to come off proving to be one of the most difficult – Diazepam, which has involved almost two years of reducing the drug at my own pace rather than the unrealistic titration rates advised to me and coming off the smallest dose I could break a 2mg tablet into.
This is a far cry from the vast quantities and cocktails of medication I had taken years earlier. Coming off medication has been one of the most life changing things I have done and I do not regret it for one moment. Years earlier I was quite dismissive of things that I knew deep down would help me; I was not ready for changing how I lived my life and loosening my over reliance on mental health services. Indeed I regarded the things that help me - like writing, being with nature, mixing with people who are not destructive - with great ambivalence, but given time I have become more attuned to what helps and what doesn’t and have learned to listen to myself and know what can set me back. It has not been easy and still isn’t. The emotions felt when reducing medication are powerful and made me doubt quite seriously what I was doing, as I felt so all over the place. Even with the experience and knowledge I have gained from understanding myself more and listening to others who have come off medication, it is still easy to slip into thinking ‘I am unwell’, yet utilising people who know about medication and having a strong support network of friends and family who can keep me grounded helps with my resolve that the emotions and feelings I have are perfectly understandable and are a natural thing. I do not think there is enough support out there to help people who are coping with some very strong emotions that can surface when medication is reduced and stopped, and the tendency for other people to view such emotion as illness is very dominant. I have realised that coming off medication is a very individual thing and you have to be ready to come off medication and be supported in this.
I regard most of my twenties as a painful lesson in growing up which was not helped by psychiatric medication and its emotionally numbing attributes. The person I am is emerging from under the clouded numbness of medication, feelings that are alien to me are surfacing after years of being dulled down.
My fear of if I were medication free, I would be alone was not really the case as whole new opportunities opened up to me. The more I was able to do things the less drugged up I was.
I am far more independent now and more accepting of the anxieties I feel. I have good days and bad just like most people do. I have not been in hospital for four years. What helps is keeping myself busy getting involved with things. I have gone on to speak at a number of conferences about various Psychology in the Real World Groups including talking about medication and my experiences, as well as setting up a Thinking about Medication group in Telford with psychologist Zounish Rafique, which was something I was very keen to do. The group went well and had a similar structure to the Thinking about Medication group I had attended years earlier run by Guy Holmes and Marese Hudson, with various speakers with different areas of expertise invited along to talk to the group, ranging from psychiatrists to people with experience of successfully coming off medication. I believe strongly in utilising personal experience along with the knowledge and expertise of mental health professionals to work collaboratively on addressing the many issues of medication and I believe through groups of this nature and talks and discussions that are now organised in various areas around the country that the way medication is thought of and used is being slowly challenged.