by Andrew Baxter
Photo by William Ismael
Recently I read the novel ‘Poppy Shakespeare’, in which the lead character was admitted against her will to a day hospital in London and found herself in a Catch-22 situation. This got me thinking about other ways the mental health services put people in this kind of situation.
I have described five of these catches, together with examples from my own life and practical ideas of how to work around them. I have jokingly given the catches numbers like ‘-43’ to stay in the spirit of the book Catch-22 and suggest that there may be other catches. I hope you can take the workarounds as a prompt to your own imagination, not a fixed recipe.
By ‘catch’, I am talking about ways in which there is something that you want from the services, which might be recognition of your problems or some kind of treatment, but then there are other things that go along with that that are less helpful, which leaves you in a difficult position. So it’s a catch – there is something that you want or expect from the mental health services but there’s a catch to it.
Some of the examples I give may seem small, but when you feel marginalised and under pressure small things can become big things. I have often felt that I had to really fight to have my point of view on what is happening in my life accepted by the mental health team.
Something that is difficult for me in writing this piece is that I am writing about care I’ve received from people in the mental health system in the town where I live over the last twenty years. It’s difficult to disentangle the observations I am making about the general situation I’m in with my feelings about my relationship with the people who have been caring for me. In some ways this relationship hasn’t been that bad, and there are times when I have been glad of the support I have had from the services.
At the same time there are also things about my situation as a service user I have found really problematic and frustrating over the years. So I have mixed feelings, but my aim in writing this is to talk about the difficult side of things because this is what I believe needs to be talked about in order for things to change. Namely how there are things about how the services are set up as an institution that can put service users in a difficult position in ways which might not be obvious to those who have not been in this situation.
Catch-43. Limited options and the pressure to comply.
A positive side of a mental health diagnosis is that it is a recognition that you have genuine difficulties coping with life, and that you may need financial or other support. It can also be a gateway to care or treatment. However, it comes with a lot of social pressure to look at your problems in the way set out by the mental health services and to accept their treatments. The range of treatments available can also be fairly limited, especially in this time of cuts and austerity. This can become oppressive if you don’t find the treatment helpful or you have your own ideas about how you want to think about your problems.
I have found it hard to get mental health workers to recognise the problems caused by medication side effects and to recognise my right to make my own decisions about medication.
I remember when I was in hospital twenty years ago being given no choice whether or not to take antipsychotics. Since then I have felt the same pressure more as a strong expectation that as a psychotic patient I should be taking antipsychotics and that if I want to do otherwise, all the pressure is on me to prove that I can do it. This is even though the medication has not stopped me hearing voices and having other psychotic symptoms.
Once when I talked about lethargy and low motivation from antipsychotics, I was told I was depressed and might need antidepressants. At other times it seems that I am being steered away from seeing the medication as part of my problem. There have also been times when it has seemed that they were willing to let me reduce my dose on my own as long as I did not expect them to take responsibility for what I was doing.
What is difficult is living with the sometimes quite distressing side effects day after day for years and not feeling that the way the medication affects you is really understood by others.
In the last year or two, this has changed for the better, partly I think due to my learning how better to communicate my experiences, and the mental health team are saying that they are willing to support me in reducing my medication. This is the first time I have really felt this from them in twenty years, and is something which I am glad of.
I also had CBT sessions, which did help in some ways, but there was no space within this format to be able to talk about wider issues of my identity and the meaning of my life, which were the questions that were troubling me most.
Know your rights.
In law you don’t have to accept any treatment unless you are in hospital or under a Community Treatment Order.
You have the right to request to see a different doctor or mental health nurse. Read about alternative ways of looking at mental health.
Talk to other people about how they cope with difficulties.
Think whether you can adapt what is on offer to meet your needs better, say by weaning down your medication or reinterpreting psychological therapies to work for you.
Catch-13. How others see us
A diagnosis, especially the more serious ones, can affect the way other people see you. People, including mental health workers, may not take you seriously, or may treat you as a lesser person.
It can feel that at a time when you most need to have a sense of being able to make sense of what is happening in your life, that is precisely what is called into question.
You could say that it is not the diagnosis that has this effect but the behaviour that the diagnosis is about, but to me it is about psychiatry lending its weight to a view of a person as individually disordered when there might be other ways of intervening in that person’s life that they would find more helpful.
In my CBT sessions I did not always feel believed when I talked about things that had caused me distress. We often ended up talking about whether things had happened as I thought, rather than about how I felt about what had happened. This might be helpful in small doses, but it felt a bit harsh as the standard response when I tried to talk about things.
Talk about times when you have coped well with something as well as things you are
struggling with. Find friends who value you for who you are and appreciate your point of view on life. Find stories of people who have managed to do things with their life despite having mental health problems, but don’t take this as a standard you have to live up to.
Catch-37. Two ways of telling a story
If you talk about your problems as a medical illness, then most people accept that and leave you alone. In this way a diagnosis works as a kind of social protection. However you then have to think in terms of having some kind of flaw in yourself as an individual person, which can make it harder for you to hold on to a more positive sense of your own identity. Alternatively, it can be more helpful to talk about problems in terms of your life history, or the meaning of your life to you, or your relationships with others. Also, talking in this way can open up the possibility of having conversations with others that change the way you feel. However talking this way can be difficult because people may not accept the story you want to tell, or not want to see how some of your problems may be caused by other people. So either way you talk about yourself has a catch – it’s a difficult choice.
I’ve never liked the term ‘mentally ill’ – it feels like a dismissal of me as a person. ‘Has mental health problems’ is somewhat better because it separates me from the problems. Really I think we need a different language for these things.
There was a time when I tried to open up a conversation with people I know about what was going on in my life when I ended up in hospital some years before, but this didn’t work out so well as I don’t think they understood why it mattered to me to do this.
Remember that the diagnosis is mainly there for the purposes of the doctors and you don’t need to take it as part of your identity. E.g. you can say ‘I have a diagnosis of schizophrenia’ rather than ‘I am a schizophrenic’.
Remember that there are options in how you choose to talk about yourself. Look for language that doesn’t let you down and which the person you are talking to will
relate to. Look for ways of talking about difficult things in your life, outside of the technical language of mental health.
Catch-28. Risking coercion
If you have mental health problems you are encouraged to talk to a mental health worker about them. This can be helpful as a way of getting an outside perspective, and they may also have useful ideas and information. However because these services have statutory powers to treat you in ways which you may not want, or which can actually cause you trauma or distress, there is a catch where the more distressed you are, the more you are risking by talking to them. So at the times you might want the help the most, you are most at risk by accepting it.
My first experience of mental hospital was pretty difficult and left me traumatised. I spent many years living in fear of it happening again, which I am only starting to get over in the last few years. During this time I have been reluctant to ask the services for help when in a crisis for fear of escalation. To be fair, I have talked about some quite difficult things with mental health workers, but there is still that underlying fear that if I am too open about what I am going through, they will take things out of my hands and force me to accept unwanted treatment.
Think about what you want to say before a meeting. Write a list.
Try talking about the easier problems first to see if you can trust them with the harder ones. Trust your own judgement about what you feel safe talking about.
Find an advocate – e.g. a trusted friend – who is willing to help represent you in a crisis.
Remember times when you have been feeling alright, especially if they are not that long ago. Plan for what you might have to do to get to somewhere
better. Realising that you don’t always have the power to control the situation can sometimes help you see how to deal with it in a more realistic way.
Catch-73. What happens behind the scenes?
You meet mental health workers in a face to face meeting, where you are encouraged to open up and talk about your problems. However they are also part of an institution which has its own procedures. They take notes, exchange letters, talk to their colleagues, write reports, and so on. In this way the institution builds up a picture of you which you are not fully aware of and may not agree with. If you ask, you are at risk of being seen as paranoid. This can make you lose faith in your own sense of what is happening in your life, because you are not sure whether your idea of things will be believed by the mental health services. It is the not knowing that makes things difficult as a service user.
I have found that mental health workers tend to conduct their conversations in a way where they are not giving away much information on what they think of what you are saying. As a service user you are left guessing how you are really seen by the institution and the people who work in it.
Talk to other service users to see if they have had similar experiences. Ask your
psychiatric nurse about what notes they are taking and when they talk to other members of the mental health team about you.
At the end of meetings, ask for them to summarise what they think has been said. Ask them to tell you how they see you and your problems. Ask for copies of care plans.
Take a friend to meetings so you can talk about it afterwards and get another viewpoint. Take your own notes on meetings. You can also request your medical notes.
My main hope in writing this article is that other service users might find some validation of their own experiences, and find ways to deal with the mental health services on a more equal footing. I also hope that mental health workers might be moved to think about how to work in ways which lessen the effects of these catches on their clients.
Invitation to dialogue
I have published this article because I would like to open a dialogue with people about the points I have raised. What I would like to know from people is if they recognise my experience of finding that the way the mental health services are set up as an institution can put us as service users in a difficult position. I.e. what I have called ‘catches’ in the article. I wrote this article to try to set out explicitly some things I have found difficult as a service user which I suspect others also find difficult but which aren’t always spelt out in this way. My feeling is that these are things which most service users would recognise but other people might not do if they hadn’t been in that situation. However I feel somewhat on my own with this so it would be good to know whether other people have had the same experience.
I am also interested in talking about how we can lessen the effects of these catches on our lives. This could be either things we can do as service users or things that people in the services could do to work differently.
Andrew Baxter lives in the North West of the UK and has been a user of mental health services for the last twenty years, after a breakdown in his late twenties. He would be interested to hear what people make of this article –
A shorter version of this article was first published in Asylum, the radical mental health magazine 27(4): 2020.