1. BIPOLAR DISORDER a Balanced Perspective Fiona Lobban EABCT 2013

2. Contributors Fiona Lobban Katherine Taylor Craig Murray Steve Jones The participants

3. Overview People are painted a very negative picture of bipolar disorder at diagnosis This MAY have a negative impact on outcome AND may be inaccurate...based on biased evidence We need to explore the positive aspects of Bipolar We need to achieve a more balanced perspective

4. Bipolar Disorder as a Psychiatric Diagnosis You have a mental illness- (forever) Characterised by periods of extreme high and very low mood You will need to take medication to control this – there are some very nasty side effects (inc kidney failure, diabetes, coma and 48 others www.nhs.uk )www.nhs.uk It is a long term condition that is likely to get worse rather than better – 40-60 % not in work 2yrs+(SR- Marwaha et al 2013) It is going to have a pretty devastating effect on your life – Highest level of divorce and suicide of all psychiatric diagnoses

5. Self Fulfilling Prophecy Negative message Hopeless Defeated Withdraw Give-up “Fail”

6. What if this message is wrong? The message is based on evidence from people who are long-term users of mental health services. Therefore it is very biased. – approx half who meet criteria are not in mental health services – Even those who are – have a more balanced perspective “I have often asked myself whether given the choice, I would choose to have manic depressive illness…..strangely enough I think I would” (Jamison, 1996, pp 217–218) - The outcome for many people can be very good – and likely to be much better if sample more broadly – Many people value their bipolar experiences to such an extent that they wouldn’t give them up – Equilibrium 2007 – 54% would press a button to get rid of their bipolar disorder- what are the other 46% valuing?

7. What can we do? Learn more about the positives AND negatives of bipolar experiences – what is valued? Broaden research to include people outside of mental health services Assess outcome on range of measures – Recovery Provide a more balanced perspective to people at diagnosis – this alone may be a simple but powerful way to improve outcomes

8. Recovery Prophecy Balanced Message Hope Self-efficacy Self manage mood “Succeed”

9. The positives….. Galvez et al (2010) – review of lit. – Concludes enhanced levels of spirituality / empathy / creativity / realisim / resilience – BUT actually paper shows how little research there is to base any conclusions on Jamison (1980) – Also identified 5 areas in which participants with BD saw positives – Sensitivity & alertness / productivity / social outgoingness / sexual enjoyment / creativity – BUT all researcher defined Seal et al (2008)– interviewed people with hypomanic experiences only – Positive controllable state, interpreted as a positive thing by self and others, not seen as causing problem. – Positives = made more social, self confidence, attractive to others, able to do more things Murray & Johnson (2010) – search of elevated creativity and accomplishment – Present in hypomania – Full blown mania interferes with this process Michalak et al (2006) – qualitative study on impact of bipolar disorder on quality of life. – Lot of negative ways – but even in this study (not specific about positives) did identify that opened up new doors of opportunity...often after many years of hardship

10. Study Lobban et al 2012 – Journal of Affective Disorders Design – Explicitly asking about the positive experiences of bipolar disorder – phenomenological Recruitment – non-NHS support groups – Met DSMIV for Bipolar I or II – Not currently in episode (or in past 4 weeks) IPA methodology – 12 interviews – 2 then excluded as currently in episode – 10 transcripts – in depth analysis of each & tried to draw out what was common but also what differed across participants – No attempt to generalise to others = more to guide us in what is important for future research

11. Our initial thoughts – Concern that offend people by implying negatives are not important – Positives will be present but may only be linked to hypomanic experiences – Positives may be swamped by negatives

12. Procedure RA introduced herself - including personal bipolar experiences Interview – topic guided – Can I begin by asking what bipolar disorder / (insert own term) means to you? – So you’ve seen the advert, what did it make you think initially? Did you have any particular positive in mind when you responded to the advert? – Have you learned anything you feel is important through these experiences? – Is there anything you would attribute to BD that you would miss? Button question “if you could press a button to get rid of your bipolar disorder, would you press it?”

13. Participants GenderAge MDQ Score (7+)ProblemEmployedDiagnosedSCIDMedicatedButton? AM2412ModerateYes FTNoBD1NoNO BM5611SeriousNoYesBD1YesYES DF3010ModerateYes FTNoBDIINoNO EM5710ModerateYes FTYesBDIIYesNO FM3413SeriousNoYesBD1YesNO HF4110ModerateYes- volYesBDIIYesNO IF4610MinorYes FTYesBDIIYesNO JM3813SeriousYes PTYesBD1YesNO KF3813SeriousNoYesBD1YesYES LM5213SeriousYes - volYesBD1YesYES More males than females Mean age 42 6 = BD 1 and 4 = BD II All but 2 had clinical diagnosis and took medication

14. Results – general reflections Very easy to recruit People had a lot to say and really valued the opportunity to say it – “it is nice, but you’re not allowed to say that, cos that’s bad insight, you have to say its all terrible, and it isn’t” Passionate interviews - impact on analysis team – “its a gift” BUT clearly experienced negatives alongside – “two edged sword because the very gift is also the curse”

15. Results – key themes Positive aspects of bipolar Direct impact on everyday living Lucky to be bipolar Bipolar and self

16. 1. Direct Impact on Everyday Experiences Amplification – normal perceptions and internal states...but to a far greater intensity- I:“if there was a dimmer switch I think they only operate within about 5%...of what a 100% would be” – Psychotic experiences F: “I wouldn’t even be thinking about demons and witches controlling my thoughts without the psychosis and this, this is the foundation of most of my writing”

17. 1. Direct Impact on Everyday Experiences Ease and ability – High functioning professionals A: “I can just come up with a solution like just like that.....it tends to be just right, its just sort of like gut instinct” B: “Oh wow.....completed this in six weeks [book] and it needed no correction at all, it was astounding....now I would love to get that back” -Not just hypomanic state B: “I’ve had to take the funeral of many children....to be able to enter in to the terrible suffering of their parents you have to have been able to explore something inside yourself of darkness and I think that that’s a real positive...”

18. 1. Direct Impact on Everyday Experiences Human connectedness -More open interactions A: “….because everything around seems so much more like energised and vibrant and like beautiful it sort of like makes you er, want to replicate that in your head and just sort of keep the good feelings flowing from you to like everyone, like a sort of mass consciousness really.” - Increased empathy and sensitivity to other people “It can give you that sort of like every man trait, because you've felt like a lot of things, you've got more stuff that you've experienced so you've got more common ground for conversation with people and I think it can just help you to be more open”,

19. 2. Lucky to be Bipolar A gift for which people felt extremely grateful – J: “It’s like kissing God” – E: “I’ve just gone blessed. I’ve been blessed, haven’t I” Why? – assumption that MORE is better in terms of life experiences, range of emotions etc. Even when these are distressing – J: “People say “Freddie Mercury, its terrible [his death]”. Hang on, he was a gay fella who got to bang loads of blokes, and he had dwarves at his parties dishing out cocaine on a silver platter. I’d have that for 40 years rather than pizza and bloody video for 75!”

20. 2. Lucky to be Bipolar Why have I been given this gift? Lucky rather than morally superior – E:”I am talking about special, not better not worse, just special, special in the sense that, er, different erm, people who um are experiencing life, you know, smelling it, feeling it, touching it, er rather than people who are just here.” Poor you! – Normal is dull – F: “....like I say, my biggest fear is being ordinary” BUT - it’s not all good - B: “it's a two-edged sword, because the very gift is also a curse but the gift in itself was simply wonderful at times”

21. 3. Bipolar and the self Three different perspectives across 10 people 1. Integral to Self E:“.... It runs through me like Blackpool through a stick of rock” Can still account for episodic nature E: “you can’t say sometimes I’m funny and sometimes I’m not so therefore I’ve got this kind of episodic sense of humour – no you haven’t. You might as well say that about bloody dandruff.” 2. Jekyll & Hyde multiple selves I: “..it's like calling me you know, my name's K L, one of them's K and the other's L, and K and L are completely different people.” 3. Illness L: “It’s finding who you are again after the illness or between the illnesses, that’s hard. Cos i don’t know if, for me, when I become ill, you loose yourself.”

22. 3. Bipolar and the self Why such different models? 1.Reconciling idea of illness with positive experience I: “...I’ve been diagnosed this but I don’t actually believe it, how you can now diagnose that somebody who is incredibly effective is actually ill” 2. Pros and cons of diagnosis Pros = A justification J “It’s just a way of dealing with the world isn’t it. But its kind of good isn’t it, because instead of being a bolshie arsey bastard now, I’m bipolar, so great!” Cons = stigma J:“People don’t like crazy folk” BUT definitely getting better B: “Well, these days its the sexy mental illness isn’t it”

23. 3/10 people did press the button – why? Demographics – All male (7/10 male) – Not in paid employment (5/10 paid) – All BD 1 (6/10 were BD 1) Qualitative – All had been grandiose when manic, sectioned, and lost their jobs as a direct result. – Talked about loss of control and shame

24. Conclusions People want to talk about the positives as well as the negatives – and there lots of them Even more positive than we expected – Actively seek it – Seen as gift – 7/10 not press button Not just looking on bright side, or just hypomania...positives in whole range of emotion

25. Limitations Small deliberately biased sample Qualitative method therefore no attempt to generalise or imply causality Context – shortly after positive media coverage – did in influence?

26. Challenging this.... Chronic psychiatric label associated with negative messages of poor outcomes

27. But not suggesting it will always be like this either....

28. www.spectrumcentre.co.uk A Balanced Perspective Huge variation in Bipolar experiences Key question – what predicts this and how do we build on it?

29. Thank you f.lobban@lancaster.ac.uk