Completely controllable? The truth about the bipolar controllability myth

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.

Goldberg, J. F., Garno, J. L., Harrow, M. (2005). Long-term remission and recovery in bipolar disorder: a review. Current Psychiatry Reports, 7 (6), 456-461.

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

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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18 Responses to Completely controllable? The truth about the bipolar controllability myth

  1. Excellent post Charlotte as always. It really is very annoying when celebs make sweeping statements like that which then make us sufferers feel even worse for not having found the magic pill or treatment that will make us symptom free. Remission is a good word – people with cancer can have remission, but the threat of the cancer returning still hangs over them. People with bipolar may, for short times, appear symptom free and maybe feel in control of things, but then the symptoms return and we plunge into depression or head up into hypomania, or dysphoric mania. Finding the right treatment is very difficult as we all respond differently to the wide variety of meds available. And doctors can’t really explain how these drugs work, making it even more guess work. Like you, I’m delighted if anyone finds a solution that works for them, but most of us can’t, hrough no fault of our own. It will be insteresting to see if Catherine Z-J remans in control or whether she also has a relapse in the future.

  2. Aliz says:

    That was very interesting to read. Catherine Zeta-Jones makes the same mistakes other people like her make, her resources are very different from the average person with mental illness or any chronic illness. The treatments she has available are far better, she doesn’t have to worry about getting poor or any average person problems, that helps when managing a chronic illness.
    I don’t know any chronic illness that is completely controllable, many are more easy to manage, some are more hard, some you need luck and it’s never going to be the same as being without any illness, that doesn’t mean life is going to be worse or never be good.

    I don’t have Bipolar but I have other mental illness and fibromyalgia, people get surprised if I’m still in pain or having problems after years, I think the ilusion that medicine can do anything and there are magical pills for everything doesn’t help us, famous people making it sound easy doesn’t help. The general public also loves seeing people “overcoming” disabilities.

    At least she didn’t talked about controlling with natural treatments that are popular for fibromyalgia and depression, that would be disastrous.
    Maybe she was trying to give hope and fight stigma, it’s not easy to accept having a chronic illness and knowing you can’t control it and believing you can have a good life, but she could have say it in a better and realistic way.

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  4. Thank you for this post. I’m a new reader of your blog, but I’m quickly finding all your posts to be informative and powerful reading.
    I’ve been thinking about this one though, and Catherine Z-J’s comments, in light of my own experience. I have BPII, and am lucky enough (and it is luck) that my symptoms are, at the moment, reasonably manageable. I have no idea for how long this will continue, but for now I have the dubious honour of wearing the ‘functioning’ label. While I am very grateful to be ‘functioning’, and really, really don’t want my symptoms to get worse, this does come with a price. Because of certain… let’s call them ‘visible marks’ on my arms, I don’t have the option of ‘passing for sane’, and yet I am not disabled by my illness (at the moment) and am well enough to work. This puts me under constant pressure to prove how well I can function – I’m currently being involuntarily assessed for my ‘fitness to work’ by occupational health, for instance, despite having no absences and having met all deadlines, because the doctor found out I have BP. I can’t get angry at this, as someone without mental health issues can, because I am under pressure not to look too ‘mad’ (and thus add weight to her allegations). When I compare this to your experience with Atos, it seems that we are damned if we ‘function’, and damned if we don’t.
    I think something similar is at work for celebrities – they’re either Stephen Fry or Kerry Katona. No middle ground is offered. Catherine Zeta-Jones *has* to say that her condition is ‘controllable’, or risk being labelled a ‘car wreck’.
    I completely agree with you that Z-J’s comments fed into a pervasive misunderstanding about BP, and that they may well prove to be harmful for many. What I’m getting at is that they also reflect the pressure many people feel to ‘pass for sane’ while still acknowledging their condition. I know that, if I want to be judged ‘fit for work’ (in a job I’ve been doing for years, and am capable of doing), I can’t afford to be too honest about how my BP actually affects me. We need a massive shift in general understandings of how BP works – and how complex and varied this can be – before we can say goodbye to these sort of celebrity stories.
    Sorry for the very lengthy response, but your post really got me thinking more about these issues.

    • Hi Hannah, thanks for reading and taking the time to comment. My bipolar is such that I don’t have a choice about whether my employer knows about my illness – I’ve just had to end my contract by mutual agreement after 18 months of sick leave. But in the 8 years of my remission, I was both asymptomatic AND fully functional. And whilst I declared a mental health condition to every employer I’ve ever worked for, the fact that I was so well for so long probably made them think I was some sort of postergirl for manageability “with the right medication.” But none of that really equates to complete controllability, because always in the back of my mind was the knowledge that I could (would?) get ill again. And here I am, coming to what I am beginning to hope is the longest (nearly two and a half years) episode ever and my most serious episode for over a decade. I really don’t mind if CJZ or anyone else says what was true for me in my remission – “with the right treatment my bipolar seems to be under control and I’m really grateful about that.” It’s making extrapolations based on ONE person’s experience AT THE MOMENT that’s dangerous, and unfortunately, when it’s a celebrity saying these things, it carries more weight…. C x

  5. Thanks for the reply 🙂

    I completely agree with you. I’m not sure I expressed myself particularly well in my last reply, but I think your post was bang on the money. What I was getting at was that the popular understanding of BP is that it’s either ‘completely controllable’ (Hey! Carrie Fisher copes just fine!) or it’s a ticking time bomb. Neither of these versions help us, and we need to move towards EXACTLY what you’ve just said: each person’s experience is different, and looks different depending on the moment at which it is viewed.

    Unfortunately, Catherine Zeta-Jones just bought into this… well… bipolar way of looking at BP. (Or the quotes that were selected for the original article did.) And this doesn’t really help those of us who are trying to get people to look beyond this one-thing-or-the-other way of thinking about BP.

    Hx

  6. K.Arment says:

    I can’t wait for a celebrity to come clean with having schizophrenia. We need some serious light on the topic that only a celebrity can provide, even if it’s a meltdown.

  7. mumsmental says:

    Thanks charlotte for putting my thoughts down in such a readable and calm! Way. As someone who’ s mum hasn’t been ‘functioning’ for more than couple weeks at a time for 6 years this headline is as far from my families bipolar reality as is possible.

  8. gerald0123 says:

    Hi Charlotte, I enjoyed your posting. I am a fellow bipolar disorder blogger and also an advocate for people with mental illnesses. I, like you and your fellow friends with bipolar, also have not seemed to reach a point where I could declare my disorder completely manageable. I truly hope her all the best! I admire people with bipolar that are able make a helpful stamp on the world in some kind of way.

    It has been about 21 years of bipolar disorder for me now. Almost my entire adult life has been full of loss as result of my bipolar. I did however come across a report from America’s Bio- Pharmaceutical Companies concerning current promising medications that are in the pipeline for treating mental illness. I may be reaching for straws here, but I am just optimistic that maybe some people will be helped by the new drugs on the horizon.

    • Hi Gerald 🙂

      I think we can – and should! – remain optimistic that better treatments will become available in the future, but that doesn’t change the fact that we’re a way off controllability now. All I ask is a bit of realism, so that we are not held up to impossible standards by our family, friends and the wider public.

      C

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  10. Hazy says:

    I know you didn’t mean it to be, but this is pretty sad 😦 I suffer from bipolar, and fortunately not as acutely as others (I havent needed hospitalisation). Currently in a depressive episode so should’ve known better to read up really! Every time this happens I wonder if I’m ever going to come out of it. It’s really horrible to think that it will always be this way. I’m still titrating stabiliser meds, having only been given anti depressants before (which caused a manic episode). Having read this, I’m not feeling hopeful for the future. Take care all.

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  12. YES! I get so sick of people thinking that, because I’m not actually AT THIS MOMENT having very many symptoms that I must be completely better. I also get frustrated at people telling me to wait until I am better before doing new things in my life. I will never get “better” – if I wait for a time with no symptoms or limits, I will never do anything.

    I can still live a good life, like many people with disabilities. But it is a lifelong disability, and needs to be recognised as such.

    • Some people saw this as a very depressing post. That honestly wasn’t my intention. I just feel it’s better to be realistic than to set ourselves up to fail by aspiring to something that’s an unattainable myth! x

  13. Mel says:

    Reblogged this on Seeing Rabbits.

  14. tommy says:

    I’m 41 and have dealt with bi polar since I was 19 if I’m not manic I’m always depressed even on medication , after a manic go into extreme depression that has lasted for Years , strips me of all self confidence , self esteem , takes all my desires away , don’t even have a desire to live , just takes its toll , don’t feel right ,don’t even feel like a human being anymore , does anyone else experience this?

  15. Cheryl says:

    This is depressing. I know I will never have a last episode, but shit, you went 8 years without an episode thats great! My longest is five years. But the prognosis seems sort of grim. Since I haven’t gone 8 years in remission, does that mean I never will because it only gets worse? I’d like to go 10 years in remission….no symptoms. Can’t I hope to have that at least?

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