I feel that in writing this post, which has been brewing for a long time, I am saying something that some might see as controversial. So let me start by making something clear. This post is not intended to criticise the work of the big charities – I am a proud member of Mind and Rethink Mental Illness and have undertaken both paid and voluntary work for both organisations. I have also volunteered for Time to Change and made a TTC pledge at last year’s Mind Media Awards. A huge amount of good work is being done on a daily basis to challenge public perceptions of mental health and to normalise discussions of the topic. Time to Change is entirely right to highlight just how peculiar it is that mental health stigma continues to loom so large given that a quarter of the population is thought experience some form of mental distress.
In this quest to normalise the topic, to reduce fear around mental health and those who live with psychiatric diagnoses, a sanitised depiction of the lived experience of mental illness has emerged. Mental health education directed at “the public” (rather than at service users) has a new defining discourse that appears to be “I had an episode of [condition X] but I sought help and with the support of my family and my mates I’ve recovered and I’m back at work.” I feel that things have reached the stage that the story “people recover from mental illness” has overtaken the somewhat more accurate “many people can recover from mental illness”. The key goal in recovery seems to be to demonstrate that you are “fine” becoming socially and economically active again, by becoming your “old self”.
This is a model of mental distress as temporary, life-changing perhaps in the sense of making the individual seeing things differently – developing newfound empathy, for example, or a greater appreciation of their support network – but not fundamentally altering the individual’s perception of themselves. Indeed a number of recent anti-stigma media campaigns focus on people with mental health conditions being “just like you or me” or “still one of the lads”, i.e. not noticeably mentally ill and therefore not scary. It’s important that the individual is not seen as scary, because what the campaigns want colleagues or friends to do is to reach out, by having a chat by the water cooler or sending a text asking how they are doing in order to cope.
This is not my experience of mental illness.
I am extremely positive about early intervention, not just in psychosis, but in any mental illness. We should indeed be striving wherever possible to make an individual’s first episode of acute mental distress their only episode. I often ponder what my life would be like if I had first been effectively treated at 13 or 17 instead of 27. My son is having his first significant experience of anxiety and low mood and I am very pleased that my local CAMHS wants to give him the skills via CBT to manage his issues now, rather than waiting for them to become more entrenched before anything is done.
But like many other people in the mental health community, I am not going to completely recover. It’s just not going to happen. I’m not being negative; the research into patterns of people’s bipolar shows it is simply a fact. I may be entering a period of remission but I know with absolute certainty that I will relapse at some point, even if I’m 100% treatment compliant. And it’s no good portraying me as “just like anybody else”; much of the time of course I am, but there are times when I am not. There have been times when I have rocked back and forth on the bus because I was manic and trying to hold in the urge to run around the bus screaming. There have been very many times when I have cried in public, occasional times when I have had panic attacks outside. There are times when I believe things that I have had to keep to myself, because I know people will be almost as frightened by the fact that I have having persecutory “unshared beliefs” as I am by their content. And I’m ashamed of it, but when I am hypomanic I am not very good at keeping my temper. It’s rare, but I sometimes exhibit what services call “challenging behaviour” for this reason. And all that’s way before I even get to crisis point. Sometimes I will seem weird. Sometimes I know I seem scary. This is not my fault, so sometimes the Just Like You and Me model makes me feel a poor societal fit.
Just as it is no good saying I am “just like anyone else” it is hopeless to say that I am now “recovered” and can make a full return to the workplace. Even though my mood is now normal, that would all come crashing down if I had to suddenly return to the workplace (assuming I could get up and get there on max doses of bipolar meds). I fully understand that within organisations a full recovery is desirable; nobody wants to go through the process of long-term sick leave, employer or employee, and the ending of a contract due to any health problem is a huge deal. But I want a narrative that acknowledges that for people with severe and enduring mental illness long periods of mental ill-health is the likely reality. That the issue should not be shoehorning us into a recovery that makes us fit for work again, but building enabling workplaces that support those of us for whom mental illness is a lifelong disability, rather than a one-off episode.
I feel like I have become the voice that responds to phrases like, “Most people will make a full recovery,” with a swift, “But even if they don’t, they still have skills and talents and value, and we shouldn’t waste that.” Sometimes doing so feels uncomfortable, even though I’m still advancing a recovery narrative, just one with a different view of recovery, that is more complex. It has some jagged edges, so it may be more difficult for the general public to swallow. But if the dominant discourse is allowed to become about the more palatable, sugar-coated “complete recovery”, it is shutting out those with long-term mental illness – yes, those with bipolar and schizophrenia and schizoaffective disorder, but also people with a diagnosis of personality disorder and those with disabling long-term anxiety disorders, eating disorders and recurrent depression. Pretty much anyone, then, that uses secondary mental health services.
I’m left trying to steer a middle course, one that is optimistic and doesn’t write off the possibility of recovery for many people. I want to communicate that positivity and hopeless when I deliver training or speak publicly about mental health. I am not suggesting for one moment that we chuck out the recovery narrative. But I want us to be real. I don’t want “the public” to have unrealistic expectations of me, or of my countless friends who also have no choice but to be in this for the long haul. Weird or maybe sometimes scary, this is who we are. I have to keep pushing this jagged little pill.