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 four 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 others. 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.
Some of the examples I give may seem small, but when you feel marginalised and under pressure small things can become big things.
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 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.
Example: 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 a strong expectation that, as a psychotic patient, I should be taking antipsychotics and that it is a big deal if I want to do otherwise. This is despite the medication not stopping 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.
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 now saying 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.
Workarounds: 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 can request to see a different doctor or mental health nurse. Read about alternative ways of looking at mental health. Talk to friends 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-37. Two ways to tell 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 to hold on to a more positive sense of your own identity. Another way to talk about your problems is in terms of your life history, or the meaning of your life, or your relationships with others. 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. Either way you talk about yourself has a catch – so it’s a difficult choice.
Examples: I’ve never liked the term ‘mentally ill’ – it feels like a dismissal of me as a person. I think we need a different language for these things.
One time 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.
Workarounds: Remember that the diagnosis is mainly there for the doctors’ purposes and you don’t need to take it as part of your identity. 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.
Catch-28. Risking coercion.
If you have mental health problems, you are encouraged to talk to a mental health worker about them. 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 want the help the most, you are most at risk by accepting it.
Example: 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 recently starting to get over, twenty years later. 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.
Workarounds: 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.
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. 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.
Example: I have found that mental health workers tend to talk in a way where they are not giving away much information about 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 there.
Workarounds: 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 to get another viewpoint. Take your own notes on meetings. You can also request your medical notes.
In conclusion, 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 work in ways which lessen the effects of these catches on their clients. Finally, I hope it helps the general public better understand the more difficult sides of being a mental health service user.
Finding further catches and workarounds is left as an exercise for the reader.
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, and has a longer version available on request – contact [email protected]