Ian Smith, Lancaster University
Bipolar disorder is a diagnosis given to people who experience periods of intense low moods but also periods of elation and increased energy which can lead to impaired judgement and risky behaviour. The Royal College of Psychiatrists estimates that around one per cent of the adult population experience bipolar symptoms at some point in their life.
UK guidance for the treatment of bipolar disorder has an emphasis on medication. However, more than 60 per cent of people with the diagnosis stop taking their medication at some point. This is often because of the common and severe and unpleasant side effects that drugs such as lithium and olanzapine can produce. These include dizziness, diarrhoea, slowed movement and substantial weight gain.
A recent review also suggested that medication only helps a small proportion of those it is prescribed to. The review looked at 12 different medication regimes used under several different circumstances and found the highest success rate was just 33 per cent. And lithium, a drug that NICE recommends as the “first-line, long-term pharmacological treatment for bipolar disorder” was found to benefit only about one in seven patients. It is also a very toxic drug. Recent research has found that around one in three of those taking lithium over many years will go on to suffer from chronic renal failure.
Despite this, patient decisions to stop taking medication are typically regarded by mental health professionals as being due to “lack of insight” or “inaccurate concerns” about a drug’s safety or efficacy. Many are also concerned about what might happen to people not taking medication if they fail to recognise when their mood is causing them difficulties.
As some researchers have suggested that as many as half of patients with a bipolar diagnosis can suffer from a lack of awareness of their mental health difficulties, a common fear is that someone who is off their medication will lose the ability to identify when they aren’t well.
To find out how people who stop taking medication manage, we conducted in-depth interviews with ten people with a bipolar diagnosis who had chosen to stop taking their medication for a period.
They told us that the first step they took was to conduct a cost/benefit analysis of the pros and cons of taking medication, and they described keeping this decision under regular review. They then asked themselves if their mood was actually causing them problems or concerns (some people do see positive aspects to experiencing their bipolar moods). Next they used their past experience to identify practical things they could do to help keep their mood at the level they wanted, or to adjust it if they felt it wasn’t “right”.
People use a wide range of strategies to manage their mood; the people we interviewed talked about more than 50 different approaches ranging from simple things like doing exercise, pampering themselves, talking to (or avoiding) specific friends or family members, to taking time off work, using techniques they had learned from psychological therapy, or even going on holiday or (in one case) moving temporarily abroad. (Post continues after gallery.)
The important thing for the people we talked to, however, was that the strategies they used had to fit their understanding of themselves, their identity and their goals in life. This was different for each person and each individual needed to identify what worked for them. For some people financial constraints also stopped them using all the strategies they would have liked to.
An alternative for some people experiencing a “high” mood was to take the extra energy it gave them and consciously channel it into something positive, such as their work or a hobby or project. However, some people we talked to suggested that just “going with” a high mood could make things worse.