Wherever I’ve been on the internet over the past few days, I keep seeing this headline:
“With my bipolar becoming public, I hope fellow sufferers will know it’s completely controllable.”- Catherine Zeta-Jones.
The story had been widely reported following her interview with In-Style magazine, and a number of well-known mental health organisations have re-tweeted the headline and link. And every time I see it, I want to scream – because bipolar is many things, but completely controllable it ain’t.
Don’t get me wrong. I’m really happy for Zeta-Jones if she has found a treatment regimen that works for her, and if she feels like her old self again. I wish that could happen to me and to all my bipolar friends. Only, looking around, I don’t see a condition that’s completely controllable; sometimes it’s barely controllable at all. What I see is friends going in and out of hospital, on and off sick leave, switching from one heavily sedating drug to another, starting and finishing therapy, all hoping and wishing and praying for euthymia (normal mood). When headlines like the Zeta-Jones quote pop up, it’s easy to wonder what we’re doing wrong. If our condition is so controllable, why are our lives still chaotic? What are our friends, family, employers and colleagues to make of the fact that we have a “completely controllable” condition, but continue to be unwell? (As one family member put it to my partner during my summer holiday crisis, “I thought she was on medication?”)
What does “completely controllable” mean anyway in the context of bipolar? There are a couple of ways of looking at the phrase. It could be used to mean that it is a condition whose symptoms can be completely alleviated by use of the right treatments (pharmacological or otherwise). It’s also possible to interpret the phrase as the sufferer having some symptoms, but in a way that is sufficiently well-managed that they can retain adequate levels of “functionality” – in other words, be able to work, parent, maintain relationships, etc. Ideally, of course, the person with bipolar would hope for both remission and functionality; Sachs and Rush, in a 2003 paper on realistic treatment goals in management of bipolar, describe this as “sustained symptom abatement while maximising patient quality of life.”
It’s true bipolar is widely regarded as a “treatable” mental health condition; but in the context of psychiatry, treatability is a spectrum. There are a wider range of possible drug treatments available for bipolar than for, say, schizophrenia or personality disorders; but it is not considered as recoverable as conditions such as anxiety disorders or unipolar depression. Despite this there’s a strong feeling, often expressed in the media, that if you have an acute bipolar episode, you can recover from it and get back to your normal self (full functionality) so long as you have the right diagnosis and the right treatment.
Even supposing bipolar is the correct diagnosis for you, and you are willing to enter drug treatment, how accurate is the notion that you will be likely to gain “complete control” over your symptoms? Rush and Sachs (2003) state that in bipolar, “cure is unattainable and recurrence practically inevitable. It is estimated that more than 90% of individuals who experience a manic episode will have subsequent episodes.” They drew this conclusion from reviewing a number of outcomes studies, which monitor what happens to a group of people (the “study cohort”) over a period of time. The Royal College of Psychiatrists (RCP) publishes a leaflet that includes outcome data on participants treated with lithium. The data suggest that the more manic episodes a participant has had over their lifetime, the greater the risk of relapse within a year. Even a person who has had just one or two manic episodes in the past has a 10% chance of having another episode in the following 12 months, although taking lithium reduces the risk by about 3-4%. For people who have had 5 or more episodes of mania, the risk of relapse within a year is 40%; however, if they take lithium, the risk reduces to 26%. And as the RCP points out, “as you get older, the risk of getting further episodes stays much the same. Even if you have been well for a long time, you still run the risk of having another episode.”
OK, so mania’s important in the relapse rate. Perhaps it’s the case that those with BPII, which is Zeta-Jones’ diagnosis, who do not experience true mania have better outcomes? Judd et al (2008) studied a cohort of 223 patients with diagnoses of either BPI or BPII. They found that participants with either diagnosis who still had some symptoms after the resolution of major episode were at “significant risk” of quickly relapsing. They concluded that “stable recovery in bipolar is achieved only when asymptomatic status is achieved.” An earlier study by Judd et al (2003) reviewed the outcomes for groups with BPI and BPII separately. They found that in line with the diagnostic criteria, people with BPII had experienced more chronic symptoms, especially depression, and had shorter interludes of wellness. Rather a long way from controllable. Goldberg et al (2005) undertook review of a number of outcomes studies and concluded that “most individuals with bipolar disorder encounter multiple affective recurrences” (acute phases) during their lifetime.
What about the alternative interpretation of “completely controllable”, which focuses on a bipolar person’s ability to function, whether or not they are completely asymptomatic? Montoya et al (2010) set out to observe 473 patients who had diagnoses of BPI, but who were in remission at the point of being recruited to the study. They found that although the majority of participants (87.6%) remained outside the clinical definition of an episode by the end of the 12 month period, only about half (53.5%) had “normal levels of functionality” – in other words, employment, relationships and so forth were impaired, even when people were not experiencing acute symptoms. This finding echoes a 2009 study by Rosa et al, which compared 71 euthymic (experiencing normal mood) bipolar participants with a control group of 61 participants with no mental disorder. The study found a “substantial proportion” of the BP group experienced “unfavourable functioning” which suggested to the study team that there is a significant degree of poor functioning associated with a BP diagnosis, even during remission. Again, older age and continued subclinical symptoms were associated with an increased risk of problems in functioning. Goldberg et al (2005) note from a review of cohort studies that there is often a gap between a reduction in symptoms and a return to functionality; thinking about my own improving functionality, there could be a range of reasons for this, including a loss of confidence in myself and my abilities after a long episode; reluctance of employers to take a chance on someone following an acute episode; the effects of often highly sedating medication on a person’s ability to be active and functional, etc.
The aim of this article is not to depress people with bipolar. It’s not all doom and gloom; some of the treatments available have a good record at reducing symptoms. Most people will have remission from symptoms at times, and in those periods can be as capable and effective as anyone else. We can work towards realistic treatment goals. But the media and mental health organisations need question why they repeat a message of “complete controllability” that can be so easily be seen to be false from even a cursory fact-check against the evidence base. Bipolar may be completely controllable for Zeta-Jones right now. That’s one person at one moment in time. It is not the reality for most sufferers, and it’s irresponsible to pretend that it is. I don’t want my friends and family to buy into the controllability myth – that just makes it harder for them to understand why I am still not back at work, why I am undergoing yet another med change, why I continue answer their “how are you?” with the same old “up and down.” I want them to know that bipolar is a complex, chronic condition which is partly controllable at some points in my life. And the fact that I cannot know if or when I will hit remission again is one of the scariest things about it.
Judd, L. L., Akiskal, H.S., Schettler, P.J., Coryell, W., Maser, J., Rice, J. A., Solomon, D. A., Keller, M.B. The comparative clinical phenotype and long term longitudinal episode course of bipolar I and II: a clinical spectrum or distinct disorders? Journal of Affective Disorders, 2003, 73 (1-2), 19-32
Judd, L., Schettler, P., Akiskal, H., Coryell, W., Leon, A. C., Maser, J. D., Solomon, D. A. (2008) Residual symptom recovery from major affective episodes in bipolar disorders and rapid episode relapse/recurrence. Archives of General Psychiatry, 65 (4), 386-394
Montoya, A., Tohen, M., Vieta, E., Casillas, M., Chacón, F., Polavieja, P., Gilaberte, I. (2010) Functioning and symptomatic outcomes in patients with bipolar I disorder in syndromal remission: a 1-year, prospective, observational cohort study. Journal of Affective Disorders, 127 (1–3), 50–57
Rosa, A., Reinares, M., Franco, C., Comes, M., Torrent, C., Sánchez-Moreno, J., Martínez-Arán, A., Salamero, M., Kapczinski, F., Vieta, E. (2009) Clinical predictors of functional outcome of bipolar patients in remission. Bipolar Disorders, 11 (4), 401-40
Sachs, G. S., and Rush, A. J. (2003). Response, remission and recovery in bipolar disorders: what are the realistic treatment goals? Journal of Clinical Psychiatry, 64 [suppl 6], 18–22