Retrospective Decade Perspectives

16 Feb

Ten years ago, Stephen Fry and the BBC made the groundbreaking mental health documentary ‘The Secret Life of a Manic Depressive’. It was huge in terms of stigma and awareness, bringing the private anguish of a hugely popular cultural icon onto our screens, and creating a new kind of factual mental health documentary.

This was barely five years into the first national anti-stigma programme in the UK, See Me. It was a short time after the ‘Bonkers Bruno’ headline. Public awareness of mental health was low. Public attitudes weren’t yet hitting and behaviour change as an objective wasn’t even on the agenda.

Personally, I had just left See Me, to work on a challenging international programme of mental health policy support. And, years into stability I was up for questioning my bipolar diagnosis and tapering of the lithium that i’d been taking for a decade, since my diagnosis in my first year at university.

I establish my adult identity on the meaning that ‘being bipolar’ gave. I was ready to adopt the identity, I felt it gave me a home in my skin, an identity to build on. I didn’t feel I had much else to do this with, common with many teenagers who experience mental health problems. I was bullied at school…I think that was the trigger for something that has a pattern in the family. Endowment + Experience.

Thing was though I experienced a lot of depression, my manias never really flew…hypomania, mixed states of frustration and bursting fizzing negativity and flights of spending…but no psychosis high. That means with an outstanding psychiatrist and a total commitment to lithium and when needed anti-depressant therapy I kept out of hospital and channelled my periods of boundless energy into campaigning on mental health.

A documentary about a hero of mine, exploring the thing that had made me me seemed brilliant. I’d worked for Bipolar Scotland, sat on the SIGN Guidelines Development Group, and lost friends to suicide. I knew what this meant to people.

It didn’t disappoint. It was compelling TV and it presented a compassionate, biographical perspective on the condition. It reflected the then prevailing view that bipolar was a lifelong condition, only controlled by nasty medication, and feared and sometimes secretly craved by people living it. We met some people living with bipolar, and saw the devastating trail it can leave. We also saw some hope, and Stephen’s example of what might be possible.

So I had high hopes last night. Ten years is a long time. About the time between first bipolar symptoms and accurate diagnosis as it happens. I was keen to see what had happened to the people involved. Stephen Fry has been through a lot since the last programme. I was keen to hear his perspectives on this. I was also keen to hear some of the other wider narratives…from those involved, from new people., and about the wider image of bipolar and mental health in the world.

So what has changed?

Bipolar has become a topic of regular discussion. Catherine Zeta-Jones, Kerry Katona…a host of others have come out. After a while some might say it became de-rigeur. Fashionable even. The term bipolar diagnose being used as an adjective….endearingly and as a form of insult.

I’ve heard the Fry effect discussed…as in ‘my family and friends expect me to be like Stephen Fry and actually I am not a genius entertainer, just an ordinary confused bloke whose life is fucked’

At the same time, mental health services have changed, with a shift to community and primary care services. The recovery movement has thrived, and has now begun to suffer from the hypoxia of austerity. How has support changed over those years? Stability is the goal in bipolar…how has austerity, changes in support availability, integration, personal budgets….an outcomes based and person centred approach affected people living with bipolar. I know from anecdotal discussion that for some…those like me who are articulate and privileged…life has flourished. For others…I know that cherished services that maintained a baseline have gone, and the future looks grim.

Self-management has transformed a lot of people’s ability to self-advocate and be experts in their care and treatment, using advanced statements and avoiding admission.  Drug therapy mainstays haven’t moved much…but atypical antipsychotics, new anti-depressants and anti-epileptics have at least expanded the options for those for whom lithium isn’t an option. Again, these are best accessed by people like me who enjoy privilege, who can use their web skills, pharmacology degree and literacy to analyse and quantify moods and suggest treatment options. How is this reaching populations at huge risk, to prevent relapse for those without the assets to bring?

Anti-stigma work has transformed, globally. In the UK Time to Change and See Me have made steps in awareness raising but we are still in the infancy of changing behaviour, creating equity, and a society where as people with mental health problems enjoy our full human rights. When I ran the media response at see me we were writing to people and emailing. Social media snowballing in the last decade has changed the face of anti-stigma campaigning, but also the face of mental health peer support.

Peer support online changed my life and got me to the place I was in 2006. I actually first used the internet for support in 1996…twenty years ago. I was keen to see how that was portrayed in the film…after all even notwithstanding this week Stephen Fry is an ardent social media and technology user and actually when he is unwell or sensitive that reflects in his self-editing of his presence there.

Many workplaces have welcomed or welcomed back people who have bipolar diagnoses. It isn’t automatically a life sentence. People adopt, have fertility treatment, practice medicine, set up and run successful businesses and continue to excel in creative pursuits. My own ‘sentence’ was commuted on the day my GP said ‘we’ll mark your bipolar resolved’. That said as I have gotten more senior in my career and gone for leadership roles some have advised me to tone down my lived experience or to stop reminding people. It was the nuclear fusion that started my career. It’s now part of the brickwork, but only a part.

In the science department we’ve begun to unravel the genetic aspects of bipolar. We’ve come to understand how bipolar depression differs from unipolar depression in symptoms, severity and response to anti-depressants. Bipolar is a mental illness where biology and genetics is closest to the surface of understanding. I’m all about the social determinants but in this case, we need to understand more to be able to help more.

Where am I ten years on? In a senior position in a major charity, enjoying work. Father to two children under three. In ten years I’ve seen and faced some things that should have caused me to relapse if I was a real bipolar…there…again I am sneaking diagnostic hierarchy in. It took me three years to come off lithium in steps. My psychiatrist said he’d see me on the ward. He didn’t. I was discharged from secondary care in I’ve been off lithium for nearly all of those ten years. I’ve never been admitted. I’ve asked to start antidepressants three times, taken them for a year and come off. I’ve not had concerning highs. I am not anti-meds. If I needed Lithium I would take it again tomorrow.

My GP marked my case resolved and I felt oddly bereft. Now it only comes up on rare occasions when I see health professionals who query why I am not on meds or seeing a psychiatrist (like at maternity booking appointments)…or when I mention it. I am so aware that I am very atypical and very lucky.

What hasn’t changed?

Bipolar still kills. It kills by suicide, it kills by loneliness, it kills by substance misuse, it kill by recklessness, it kills by comorbidity…

Medication side effects lead to obesity, diabetes, endocrine issues, kidney damage. This, and lack of self-care and insight mixed with stigma can lead to diagnostic overshadowing, cardiovascular disease and death as soon as 21 years earlier than the rest of the population.

75% of severe mental illness starts in childhood, and bipolar diagnosis in young people is there…but personally I think too many young people and parents want a label that I know from experience is sticky. We need to support self-management with young people, to address moods in the hardest of transitions. At the same time we know that transitions like parenthood and retirement/ageing affect bipolar. Years ago people like us didn’t do those things. Now we do. What does that mean?

So did the programme go there?

Partly. It touched on co-morbidity and it certainly showed the harsh reality that for many people bipolar is a long-term, corrosive, unpredictable roller-coaster that challenges a person, there supporters and services.

But. I felt, personally it missed the chance to reflect the rich range of experiences that people have, from the reality of mental illness in multiply excluded populations, to the experience of those of us who live well without medication, those who work in ordinary jobs delivering mail or in your office, or the kind of hope that creativity and connection with peers can bring?

Where was the contact theory…the range of people with whom you could connect? There was a lot of medical model talk about medication being the only way. There was a deal of charity model talk about the challenges people face…pity inducing. There wasn’t much social model. Not much of the ‘I am out and proud and life is sometimes hard, but I am doing it’. If the contact and impression it makes is that people with bipolar need sympathy, need to take their meds, and if they are really lucky can sometimes work…i’m not sure that achieves what we need to in terms of rights. Even if for many that is true.

I can’t help but wonder how i’d feel if i’d just been diagnosed, or if my 18 year old self had been watching with my loving parents who got their heads round it and got stuck in to trying to guide me.

Stephen Fry has been a hero of mine for years. Robin Williams was too. I guess here Stephen was the ‘living well with symptoms’ person. But he’s distant from many of us. Too distant. Mental health TV has moved on in ten years and I don’t think this moved far enough with the times. For me Jon Richardson took the crown of celebrity self-discovery and peer connection with the OCD programme he made for channel 4 in 2013. Despite my hopes Stephen Fry hasn’t retaken it.

I don’t know if i’m over-reacting. Lots of input on twitter last night was positive. My concern was that yes, it was an interesting programme.  But did it accurately reflect the issues? In a poll of people with bipolar for Mind, twitter followers were asked of the programme was accurate. of 356 responses 62% said it was accurate enough, 38% said not accurate enough. Which for me is about right. 38% of people with bipolar wanted something else. I’m one.

I’d love to see a major piece of work on a decade ‘retrospective’ on life with mental illness. Bipolar and otherwise. How has life changed? How has it stayed the same? What does that mean for the way we talk about mental health, the priorities we set for services and policy, and the TV we make…things to ponder.

published in an entirely personal capacity

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