How do you prepare for mental illness? I think it is exceedingly hard, and can often require the kind of confidence that is, by definition, missing in such circumstances. I have never managed to prepare well, by which I mean that I have no written plan as to what care I would prefer. The saddest aspect of this is that I have at times spoken about what I don’t want, but have had little thought about what would be positive and helpful.
One obvious problem is that people change their minds about what they want when they are ill, but it is also far harder to consider and process options at these times. At the most severe end, people can fear what is being suggested, and misconstrue the motives of those who are caring for them, hardly the best context in which to make the right decisions.
So where do you start? I’m talking here about people who have had previous episodes of illness, while acknowledging that those who have a first episode may also have difficulty accessing treatment, perhaps more so. But the first step is contacting someone who might be able to help, or someone else being able to do this for you. I am very fortunate that I have easy access to my GP and psychiatrist, and am aware this this is unusual. Recently I contacted my GP practice when my GP was off – I spoke to someone who was helpful, but realistically a phone conversation with someone who knows nothing about you, or your illness, is not the best. Basically they signed me off and checked that I wasn’t suicidal – taking care to ask, but not offering care, I’d call it. But in the current circumstances of the pandemic, I’m not sure what else they could have done, being fair. Perhaps I was disadvantaged by being a psychiatrist myself – it can be off-putting.
For many, all care will be provided by their GP – there are long waits to see secondary care, and most who are stable will be discharged. I have always been lucky that I can see my psychiatrist quite quickly if I need to; the problems are more around what I feel able to tell him, and that is where my written plan might start to come in handy. I have bipolar disorder, something that I find hard in itself to discuss. My most severe episodes have been depression, although retrospectively I am pretty certain that some of these episodes were mixed in nature. I have also had episodes of irritability and elevated mood, some quite prolonged, and often very productive until they aren’t. Recovery from all episodes is prolonged, and even between times I experience significant anxiety, which I don’t like to admit to. I think my life has been significantly affected by severe mental illness, although I am undoubtedly high functioning.
My natural reaction to being asked how I am is either ‘Fine’ or ‘Could be worse’. It’s an automatic reflex. I won’t say ‘Depressed’, ‘Irritable’ or ‘Suicidal’. I don’t have the language, and I’m afraid of not being believed. But although I can become quite ill rather quickly, there is usually time to intervene, hopefully to reduce the chances of hitting the bottom. The absolute worst response if one tries to say that one’s struggling is ‘You look all right.’ I know I look horrible when very ill, and I really don’t want to get that point, so I try to make myself look OK in order to feel better. I wear make-up until I really can’t. I want to be able to say how I feel, and not be questioned or doubted, because I’m good enough at doing that all by myself.
I also want to be asked whether I should be working, as sometimes I can, if only mildly depressed, but it may or may not be the right thing to do. And I want, most of all, to be asked how I am managing. I also want to be asked about suicidal ideas – these are fundamental to depression, and I know I don’t need to remind any psychiatrist that talking about them won’t make them worse. But when I’m ill I need support to manage them.
I want to know what medication will be suggested, and why, and how long I might have to take it for. It is very easy to create a situation where it can end up almost being a fight over whether to take something or not. If that has happened once, then thought should be put into future plans, as they are unlikely to be sustainable. One can get stuck – this seems to work a bit, so let’s just put up with the side effects – but I’m not sure that’s best. Why not have a different plan? There could be a plan B that involves the original medication, but there must be conversation about this before it all goes wrong again, when thought is still rational.
For me, ECT has been an effective treatment when very depressed – I would have it again, but I’d like to be very clear in what circumstances this might arise. Can I request it? Or, will it only be given if my psychiatrist deems appropriate? – bearing in mind these may be the same. One other question, which I’ve found difficult to ask – would I be able to be supported by the home treatment team? I know others who have, and have found it hugely helpful, and I have wondered if this has not been offered because I am a local psychiatrist.
There are a few, final, unmentionables, and these are the potential of admission or detention under the Mental Health Act, and even typing these words is acutely painful. But – they become even more unmentionable if they are never mentioned, and it is probably important to establish what would happen. Even the basics matter, such as would this be in or out of area? Would I be given ECT against my will? It is so easy to say that none of these things will ever happen, and I hope they won’t, but it’s actually a bit naïve to just assume, given how ill I have been in the past.
I hope I’ll never need my plan, but I can’t help hoping I might make it.