Bipolar illness: My ever changing moods
Jon Cousins' smart way of tracking the highs and lows of his own bipolar illness has led to an online tool that's helping other sufferers. By Sophie Morris reports
Tuesday 22 March 2011
When Jon Cousins confessed to his two closest childhood friends that he suffered from bipolar disorder, they were stunned. They had known him for four decades or so, but he had hidden his illness so diligently that no one close to him suspected he was anything but contented.
Meeting him on his narrowboat, moored on London's Regents Canal, it is easy to understand their surprise. Cousins is a sprightly 55-year-old who lives between Cambridgeshire and San Diego. He chose to do business on America's west coast simply, he says, because he imagined it would be a nice place to spend time. He's carrying coffees for everyone and in his bag are a brand new iPad and a copy of a The New York Times magazine, which featured him in an article about how geeky internet pioneers are using the web to record the minutiae of their daily lives. In Cousins' case, he has harnessed a piece of cyberspace to record and manage his mental illness.
During the many years he had been hiding his illness from friends and family, Cousins became a successful businessman and entrepreneur. He started his career as an advertising creative and went on to open his own agency in his late twenties. At 40 he sold the business, which was turning over £12m, to travel the world, and returned to the UK to work on a series of internet start-ups. Unexpectedly, his full time job is now with Moodscope, the online tool he's created to help other people with mental illness. The site is showing remarkable results.
Behind his outward success, Cousins had always experienced severe bouts of depression interspersed with spurts of creative highs, when he would work through the night and act on new ideas – the "manic" part of living life as a manic depressive, as bipolar disorder was formerly, and still is commonly, known. "I didn't mind the highs at all," says Cousins "I was just very creative during those periods and I like working. But to operate like that all the time would burn me out." And the low points? "They were abjectly awful. Completely terrible. Terrible, terrible, terrible. I wouldn't go out. I would draw the curtains, wouldn't answer the phone and make excuses not to meet people. This would go on for a number of weeks."
Cousins is not unusual in hiding such a serious illness. Statistically, one person in four is affected by some sort of mental illness, but this is very much a guestimate because of the large numbers who don't seek medical help. Women are twice as likely to suffer than men, though men are much more reluctant to ask for help, which is one reason given for their higher suicide rate.
Cousins had been reluctant to seek help because he thought his irregular moods were symptomatic of modern life. "I just thought that was what life was like," he says. "I think that's true for so many people. They just try to muddle through themselves and don't talk about it. The stigma around mental illness persists partly because people just don't talk about it."
Cousins had asked his doctor for help on several occasions. He spent his late thirties on antidepressants and was referred for psychotherapy several times. Neither approach worked. "I hated the therapy so much that when I came out I treated myself to an LP every week," he says. "That way I could look forward to the session finishing." On one occasion he returned from holiday to discover his therapist, who had promised to reveal exactly what was wrong with him at their next session, had died while he was away. He was overjoyed to be spared further examination, and wriggled out of being set up with another therapist. "It didn't help at all and one [of the psychotherapists] was bloody awful. Our relationship was dreadful. Now I know that the most important factor in predicting whether therapy is going to work is the relationship between client and therapist."
When, in 2006, he noticed that his high periods were becoming less frequent and the low periods were longer and darker, Cousins returned to the NHS. He was unprepared for what followed: a psychiatric nurse referred him to a psychiatrist, and he was faced with a wait of months for a diagnosis. It was December and he left the appointment feeling lower than ever before. He knew he didn't want anything the NHS could offer him to deal with his problems: he hated therapy and didn't want to submit to medication and risk losing the high periods in which he flourished. He contemplated suicide as he walked across a railway bridge. "It was a tough Christmas," he remembers.
The worst bit was the wait. The following February, he met a psychiatrist who said she suspected he suffered from cyclothymia, a mild form of bipolar disorder, considered to be on the "bipolar spectrum". Stephen Fry is a famous sufferer, and two of Cousins' friends, independently, had said to him they thought he might have it too, after they had seen Fry's BBC programme, The Secret Life of the Manic Depressive.
The psychiatrist asked him to go away and record his moods before his next appointment. Not sure of how best to do this, Cousins turned to Google and came across a test called Panas – the Positive and Negative Affect Schedule. "There were all sorts of tests online for depression, but I wanted something that would tell me not just if I was feeling depressed, but also if I was happy, and how happy."
Ever the ad creative, he adapted the test into a set of playing cards. Each one of 20 represents a different mood and is graded from one to four, so Cousins could give himself a four one day for "alert", but a zero for the cards marked "proud" and "excited". He plotted his progression on a graph. In May he met another psychiatrist, who confirmed the cyclothymia diagnosis from the mood charts. This was a blow, even though it meant Cousins was no longer in limbo. "Once you've questioned your own sanity so much, you then start to question your own insanity," he says.
But the psychiatrist was baffled and amazed by the way Cousins had recorded his moods. At first he couldn't believe that this patient had devised the playing card method and made them himself; he then moved on and said that they should be made available to other people. "That was when I first started thinking of Moodscope," says Cousins.
Moodscope began to develop when it was put online. Cousins asked his friends to monitor his own progress and join in if they wished. Four years later, it works as an online community for people suffering from mental health problems and has more than 16,700 devotees. Every day, users can take the same test Cousins did (and still does) himself. Their mood is given a percentage for the day where a zero means someone is at rock bottom. Each result is then plotted on a graph that, with time, allows users to look back over their high periods and low ones – or however their depression manifests itself – with much greater accuracy than a few notes in a diary would permit.
But Moodscope does not function merely as a record of past behaviours and feelings. It treats them. At least this is Cousins' experience and the reason he wants to share it. "I think the process has cured me," he says. His current mission is for Moodscope's benefits to be confirmed by external researchers. The hope is that, eventually, it might be considered a primary treatment for depressive illnesses. The Institute of Psychiatry is carrying out a pilot research project into Moodscope, analysing 20 patients already using mental health services.
Results are due in the summer. The psychologist Emese Csipke, who is leading the research, expects it will identify Moodscope as beneficial. "I think it's quite unique," she says. "There are lots of different ways to monitor moods, but Moodscope's feedback and the card system are quite different to anything else out there. That it reminds you to take the test every day and gives a score is really interesting."
The other important aspect to Moodscope is its "buddy" system. Users can nominate one or several friends to keep track of how they're doing. Each day the chosen buddies are simply emailed the score of the user so they know what sort of day their friend is having. It is then up to them to act on this information, perhaps with a phone call or email. "It is up to people to come up with their own routines," explains Cousins. "I've got four buddies. One's in Israel and he only ever emails if my mood dips, and then it's just a question mark. I email back to explain, and by the time you've explained, you've understood yourself what the problem was. Others email me every day with a sentence and a few words." One user is about to start experimenting with tweeting his daily scores to his 500 Twitter followers.
On a scatter chart of 217 users over 28 days, the results show that while some people scored lower at the end than the beginning, improvement also depended on the number of times over the month the daily test was taken: infrequent users see some, but little, change, but the committed daily users saw a 15 percent increase in their scores by the end of the month. And those who used buddies did better still.
One user, who has suffered from depression since childhood, says using Moodscope helps her to stop a down period in its tracks. "It's not immediate," she says. "But seeing my graph working its way down somehow helps me stabilise and move back towards a neutral place. I can begin to slow down my thoughts and activity before impulsiveness leads me to risky behaviour."
At the moment Moodscope is free, but Cousins will have to start charging a nominal monthly fee soon to keep it going. Two applications for funding from the NHS, which Cousins was confident he would win because of the support from the psychiatric profession, have already been refused. "They're looking for medical devices to fund," he explains. "Which normally means a box with plugs and leads. The minute you come up with a 21st-century medical device – using the internet – it doesn't fit in with what they're after."
Though he considers himself cured, that doesn't mean he feels 100 percent all the time. "It hasn't completely stopped me being depressed and it certainly hasn't stopped me having low moods. We all have low moods and we're all going to feel bad at times. That's a part of 21st-century life. What Moodscope has done is give me a tool to manage those low moods, and shown me how to get help from other people."
What is bipolar illness?
* Bipolar disorder, also known as manic-depressive illness, causes unusual shifts in mood. It involves periods of elevated mood, alternating abruptly with periods of depression. Bipolar disorder affects men and women equally. It usually first appears between the ages of 15 and 25. The exact cause is unknown, but genetic factors appear to be involved.
* Cyclothymia is a mild form of bipolar disorder that may often go undiagnosed. It usually begins early in life, appears to be equally common in men and women and affects 0.4 to 1 per cent of the population. Stephen Fry is a famous sufferer.
* Cyclothymia is a long-term condition that usually requires lifelong treatment. Treatment options include mood-stabilising medication, antidepressants, talking therapy or some combination of these three therapies. Lithium, a mood stabiliser used in the treatment of bipolar disorder, has been proven to help many of those with Cyclothymia.
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