As a psychiatric patient you don’t always hope for a cure. The best you can expect is to go into remission from your illness, perhaps with medication, perhaps with psychological help, or even just with the passage of time. Illness is more often controlled than vanquished, lurking in the wings, ready to return when you get too confident. This isn’t unique to mental illness, and applies, also, to many physical conditions. Diabetes and high blood pressure, for example, usually require life-long treatment, as do asthma and other chronic conditions. But there are illnesses that can be cured, notably infections, with antibiotics; and surgeons can remove offending parts and sometimes, although not always, effect a cure. Clearly this is a very rough overview of medicine, but it can so often seem that we are holding illness back, rather than vanquishing it. Maybe we need to accept that this is acceptable.
So, perhaps illness can be viewed in a number of different categories. Firstly there are mild and self-limiting illnesses, like the common cold, that come and go and may even make you stronger. Then there are illnesses that can indeed be cured by medical or surgical intervention. Then there is a multitude of conditions which may be alleviated or partly cured, often with more or less side effects. And if you take a drug to replace something, like insulin or thyroxine, this is probably quite different than taking one which tries to actually treat the symptoms, or even the underlying disease.
Going back to mental illness, not much of it fits into a nice treatment model like that of bacteria and antibiotics – although we shouldn’t dismiss this concept entirely, inflammatory and even infective causes may not be as unlikely as they sound. But, on the whole, most conditions are hard to shift once they make themselves known. Often it seems as though we are only treating the symptoms, while waiting for the worst to pass. And it can pass – depressed people, for example, can become thoroughly undepressed again, with, and sometimes without, antidepressants. But they are usually advised to keep taking them afterwards, for fear of relapse. Do they work by preventing or re-treating those recurrent symptoms? I don’t know. ECT has acquired at least some of its criticisms because it doesn’t cure people, but that really isn’t its remit. People have it because they are very unwell, and need rapid alleviation of symptoms, and it does do this. But it doesn’t remove the underlying mood disorder, which may well require long-term treatment to keep it at bay.
Why, then, in addictions, do we talk of recovery? This is a much more powerful and hopeful word than remission. With remission, you might, at any time, go under again; with recovery, you have left your illness behind. Yet those in recovery will usually acknowledge that this thing will never leave them, that even on the other side, there is always a risk of relapse. Maybe these different words have arisen out of a concept of choice? It has often been viewed that those with addiction have more control over their illness, although, having worked in this area for many years, I am doubtful. On the one hand, you have this horrible illness, but, with enormous willpower and acknowledgement of personal responsibility, you can beat it. On the other, you have this equally horrible illness, for which you are blameless, yet there is little you can do personally to overcome it. I think this is reflected in the exclusion of many substance misuse disorders in the UK Mental Health Acts.
Things are never this simple, however, and many unfortunate people will have a bit of both disorders. It must be very confusing when you are recovered from one, and in remission from the other. What does this mean to patients? How much control and autonomy can they take from this? As doctors, we have had a long reputation for taking a paternalistic approach, although this has changed in recent decades. We want – rightly – to involve patients in their own care and decisions, and to give them the information that they need for this. Many embrace this, but in my experience, some definitely don’t. ‘You’re the doctor, you should know’ is a common response; when I’m a patient, I want to be told what to do (even if I don’t do it).
Recovery and remission are, to me, quite different. If I could recover, I would be completely free of my illness; I could have low days without panicking. If someone is alcohol dependent, however, recovery doesn’t usually leave them free to enjoy a pint with Sunday lunch. The cost of their recovery is that they need to continue achieving it, they will always be just on the other side of the door of recovery.
The use of language gives hope, however, and recovery shines bright. Remission is a clinical word, unlikely to be used in poetry. And yet there is a lot that people with mood disorders can do to help themselves, such as seeing people, exercising, being outside. Some days I can feel pretty recovered until I have to take that small handful of unpleasant tablets, reminding me that I’m only in remission.
I wonder if we could revive the language for getting better. I’m not sure about recovery, I know you can recover from an episode, but even the word episode implies another might come. And recovery in addictions shouldn’t mean responsibility. Renewal, revive, rising from the ashes – why do these word all begin with R? They are circular words, suggesting reinvention. I don’t think there is an ideal word, and we have to make use of what we have. But we do need to consider whether our use of words reflects our views of the disorders themselves. We need to think why they are different.
Excellent article Rebecca. Very well written and clearly expressed. X
Thanks Heather! X
Thanks for another excellent post, Rebecca. It grates with me a bit that these days CMHTs are expected to work to a “recovery model”. My cynical side thinks that this is just a money saving exercise. It also puts the onus on the service user to “get better”, which can sometimes be a good thing as we all have to take responsibility for our choices in life, but it can also be very blaming if someone does not “recover” as we would like them to. Also, I’ve never known anyone to “recover” from dementia or from any other neurodegenerative disease (old age psychiatrist speaking!). Like you, I hate the constant reminder from my tablets that I am in remission rather than cured/recovered, but I’m also thankful that they work for me.
You’ve also got me thinking about the language we use in relation to cancer, as I had the pleasure of having that last year too. If you survive, you are a warrior. If you don’t, you lost the “battle”. Your reference to surgeons cutting things out also make me think. Yes, they removed my cancer, but they couldn’t remove the emotional impact of the diagnosis or the psychological sequelae of having gone through it. My body is no longer the same as it was before I had the mastectomy, even though from the outside, the implant looks almost as good as the real thing! Is this recovery? In part. Ho hum, lots of things to ponder!
Marisa x
Hi Marisa – This is really interesting. I think language used is so important, and this includes different people’s understanding and perception of it. It’s very difficult to get right, but perhaps needs to be explored more? X