In pre-Internet times, when first diagnosed, I read avidly about bipolar and my main source was Pendulum, the quarterly magazine of the Manic Depressive Fellowship (now Bipolar UK), which featured:
- news and latest research about bipolar
- information about the charity
- practical issues, lived experience and case studies
- its activities locally and nationally
- occasional invitations to participate in research
Research comes in different guises and covers a range of hypotheses – medication, heredity, life, psychology and practical daily life – all things that can affect the person living with bipolar or their family, carers and friends.
The first research I took part in was in Denmark Hill, in a building just behind the Maudsley Hospital where I recovered from my first psychotic episode. Down the road from where I lived, it was in the offices of the Institute of Psychiatry, Psychology and Neuroscience (IOPPN) and I strolled down one Saturday afternoon to be met by a young researcher. I don’t remember the detail of that experiment now, nor its outcome, but I have had reason to return to research.
Research I have participated in
BDRN and True Colours
Through Pendulum I found out about the BDRN (Bipolar Disorder Research Network). At the time it seemed to have close links with the charity and has an impressive catalogue of research as well as the True Colours mood tracker. I was interested in what they did and signed up for a project. Another young researcher came to my house, took blood samples and we worked all afternoon in my front room charting life events against my psychotic episodes. This also interested me, since at my first episode of psychotic depression there had been little enquiry on the part of the clinicians as to what had happened before the immediately preceding week or fortnight. Ten years later I had my third episode and my life story came much more to the fore – I guess this may have been as the result of research – that by that time there was a more nuanced understanding of triggers and experiences in mental illness.
Cognition research in bipolar
I have engaged in two pieces of work related to cognition (thinking and memory). The first at Charing Cross Hospital under my treating consultant psychiatrist. This took place in a room that looked like a proper laboratory. This experiment required me to wear a cap (as in the image for this blog post) with gloopy gel connecting electrodes and my skull. The set up was laborious and time consuming. I then spent a good hour looking at black and white photos of faces on a small computer screen and clicking a mouse in response to them. Prior to considering each set of photos I had to think of happy or sad things to set my own mood. Again I was not sure of the aim or outcome of this work but have found reference to it online at ResearchGate and trust that scientists made some headway in their understanding as a result.
CRiB2 study – cognitive remediation therapy
Seeing a post on Twitter last autumn, I signed up for a second piece of research about cognition and bipolar at King’s College, London, two decades on from the last time I was in Denmark Hill. This work lasts over a period of a few months and is lead by a psychologist rather than a psychiatrist. It is testing whether or not a therapy called cognitive remediation via a piece of software Circuits, is helpful or not for people living with bipolar. It also has quite practical outcomes – to help people with bipolar in their daily living by understanding their own thinking and cognition better. There are several centres across the country and I encourage anyone who is eligible to take part. You can find out more on the CRiB2 website.
Bipolar overspending and debt
A well-documented characteristic of hypomania and mania in bipolar is that people may become flamboyant in their generosity, overspend and get themselves and loved ones into debt. Dr Thomas Richardson, a psychologist at Southampton University has been conducting research to find out more on this practical and sometimes life-changing issue. He is currently asking for people with lived experience to complete a short questionnaire and help plan further research.
Living and learning with mental illness
Finding out about current research is much easier now than it was thirty years ago, even if you don’t work in academia. Social media, search engines and digital alerts all help to keep you up to date with the latest research news. And there are other informal ways to find out and learn about the condition.
- support groups (several mental health charities have them, whether face to face or online)
- books, magazines and websites
- following academics or clinicians or research groups on social media
all of the above have provided useful information and led me to paths of better understanding.
Mental illness in the media
Recently Bipolar UK has appointed a Director of Research, Dr Tania Gergel, who lives with bipolar herself, so their research blog will be one to watch. Dr Gergel also featured in a recent BBC Radio 4 programme Shocking about the experience of ECT. She has long been an advocate for Advance Directives, where you detail and share with clinicians, your preferences for treatments when you are unwell. I have an Advance Directive (aka Advance Choice document) and sent copies to friends as well as my psychiatrist and GP, so they all know what I do and don’t want.
A long established BBC Radio 4 programme, broadcast at the 9pm science slot, is All in the Mind and bookmarked on my laptop. It has been useful and interesting in providing tips on living well with mental illness.
Similarly the pairing of Horatio Clare (a writer who has published his experiences of mental illness) with psychiatrist Femi Oyebode has made for an insightful series about mental illness and its care. The title of the series and its theme, poses the question Is psychiatry working?
Mental illness awareness campaigns
Awareness campaigns seem to be a bit of a double-edged sword. When they come around (World Bipolar Day on 30 March and Mental Health Awareness Week in May in the UK) online forums come alight with comments that they gloss the surface and never really represent the harder truths about mental illness. Thirty years ago I had never heard of manic depression when I was diagnosed. Nowadays I think people have heard of serious mental illnesses like bipolar, schizoaffective disorder or schizophrenia but still may not understand what they are as demonstrated by the way language describing mental illness is misused. We are still on the journey…
Storylines in radio, TV or films can also portray characters more sympathetically and contribute to helping the audience understand better. Media folk are better now at research and reality-checking with those who know, when devising scripts or portraying characters.
Further information
Bipolar life: Medical information – a directory of organisations & research centres