Yesterday I said that this is a theology blog, with a diversion at times into politics, and here I am doing a not journal club and I am starting with an article in the NY Times (of all places). One of the Aussie academics managed to put this up, which is the medical version on stigma. This is what we see.
Much good has come of the increased willingness to discuss mental disorders. There is greater acceptance than in the past that mental illness is real and common, and that when it arises, its causes are complex and cannot be explained away as weakness or lack of character. All of this is vital in reducing stigma, which in turn encourages people to step forward and seek help without shame.
But as a doctor who works in mental health, I think the direction of the conversation should give us pause. I work in a public hospital where our patients include those with many conditions that have been slower to shed stigma, such as schizophrenia, mania, severe depression and personality disorders. This stigma differential is something I feel keenly when observing which diagnoses patients will or won’t accept.
It is common for patients to resist a diagnosis with a psychotic component, insisting instead that what they really have is depression that should be treated with antidepressant medication rather than antipsychotics. They may describe themselves as having an anxiety disorder, when there is in fact a longstanding diagnosis of a personality disorder.
The conversation about mental health has become so focused on mild to moderate illness and stigma reduction that it does a disservice to people living with mental illness at the more debilitating end of the spectrum, fueling misunderstanding of the nature and risks of these illnesses and under-resourcing of treatment.
Furthermore, the narrative that “mental illness does not discriminate” and “mental illness can happen to anybody,” which has been important in tackling stigma, has had the unintended consequence of disguising the political and economic dimensions of the way that mental suffering, and the treatment of suffering, is unfairly distributed.
Lisa Pryor, New York Times
The unfairness of the distribution is real, agreed. But the severe end of mental illness hurts. Since I did not do a Saturday journal club, one has to read, even more than Lisa’s article, this. For one of the Guardian writers has a serious mental illness, and as she points out, is is not at all nice, pretty, or easy.
In the last few years I have observed a transformation in the way we talk about mental health, watched as depression and anxiety went from unspoken things to ubiquitous hashtags. It seems as though every week is now some kind of Mental Health Awareness Week, in which we should wear a specific colour (although this year no one could agree on which: half wore green, half yellow).
In the last few years I have lost count of the times mental illness has been compared to a broken leg. Mental illness is nothing like a broken leg.
In fairness, I have never broken my leg. Maybe having a broken leg does cause you to lash out at friends, undergo a sudden, terrifying shift in politics and personality, or lead to time slipping away like a Dali clock. Maybe a broken leg makes you doubt what you see in the mirror, or makes you high enough to mistake car bonnets for stepping stones (difficult, with a broken leg) and a thousand other things.
Oh, I know how it’s meant. The lack of stigma should be the same as telling people why your limb is in a cast. But you can’t just put someone with a broken leg and an insane person side by side and expect people not to be able to tell the difference, like the Winklevoss twins or, can we be truly honest, Joanna Newsom songs.
In recent years the discussion around mental health has hit the mainstream. I call it the Conversation. The Conversation is dominated by positivity and the memeification of a battle won. It isn’t a bad thing that we are all talking more about mental health; it would be silly to argue otherwise. But this does not mean it is not infuriating to come home from a secure hospital, suicidal, to a bunch of celebrity awareness-raising selfies and thousands of people saying that all you need to do is ask for help – when you’ve been asking for help and not getting it. There is a poster in my local pharmacy that exclaims, “Mental health can be complex – getting help doesn’t have to be!” Each time I see it, I want to scream.
The Conversation tends to focus on depression and anxiety, or post-traumatic stress disorder. It is less comfortable with the mental illnesses deemed more unpalatable – people who act erratically, hallucinate, have violent episodes or interpersonal instability. I don’t want to pretend that this stigma is merely a hurdle to be overcome. Stigma exists from a place of real fear, and a lack of understanding of the behavioural changes that can accompany mental illness. Episodes of illness can be frightening, frustrating, tiring and annoying for both the unwell individual and those around them.
The key isn’t to deny this, but to educate. Instagram slogans do not make it clear what depersonalisation is, for instance, and that it won’t be solved by a picture of someone walking on a beach.
It’s the offer of a Valium in an inpatient ward to calm you down upon hearing that they don’t have your regular medicine, and it’s the amazement at the response when you turn down the Valium and request that, given you’re in a hospital with a pharmacy attached, someone source your normal medication. It’s being told by doctors for more than a decade that this medication is imperative. And then being told by a doctor that that medication is wrong, and if he had his way there would be no medication for mental illness at all – and not recognising that this might be an alarming thing to hear.
The waiting. The offers of therapies that aren’t suitable because there is nothing else. (Throwing a ball of wool to one another in a circle might be helpful for some people, but it absolutely wasn’t for me. I knew it wouldn’t be. But I gave it a go.) The being matched with a therapist who, through no fault of her own, is unsuitable (you have friends in common) but who you don’t ask to change because you know there isn’t another. The 10-minute GP slots that take weeks to secure.
Even when everyone is doing their job well, and many do, the treatment of mental illness is a slog. The trial and error of finding a productive medication, or multiple medications. Multisyllabic names in packets with go-faster stripes. The implicit paradox of becoming ill and necessarily hospitalised, meaning being removed from all the things that normally help. The expense of prescription charges for lifelong conditions that (aside from in Scotland, where all prescriptions are free) are not exempt, though some physical illnesses are. The fact that, if doctors only ever see you at your worst, or in crisis, they are not getting the whole picture, which is crucial with mental illness.
How do I explain that, sometimes, I doubt the professionals know what they are doing? Or that sometimes, when I am ill – and this goes against the grain of the Conversational rules – I doubt bipolar disorder is even a thing. (Or emotionally unstable personality disorder, or body dysmorphic disorder, or adult ADHD, all terms I’ve heard used about me.)
Hannah Jane Parkinson in London last year.
Hannah Jane Parkinson in London last year. Photograph: courtesy of Hannah Jane Parkinson
How do I explain that it is never as simple as having this, or that? How do I tell you that it is horrible being an inpatient, because there will be people there who are crazier than you, and you do not want to be around those people? Sometimes the situation will be reversed.
When I am well, I sometimes think I will be fine for life, and want to abandon all my medication. And when I am not well, I think maybe I really am just a fuck-up, and should not be dealt with sympathetically. We don’t talk about self-stigma because, as part of the empowering new Conversation, this is also not allowed.
How do I tell you the worst part of me desperately wants you to get help but also doesn’t – because already there is not enough help and too few beds, and there is not enough to go round.
Hannah Parkinson, The Guardian
If there is one article you link to from this site this week, read Hannah’s article. I first read it a week ago and I’m still furious. When she says — because she is a woman who cares (no one ever said that a serious mental illness meant you could not see clearly at times) — that she gets care because she is a highly educated journalist and feels guilty I am ashamed and angry because she is not getting best care. No one is. Best care involves talking therapy and at times medications and above all time, and the NHS, like the NZ mental health system, does not have enough of either. She is right. There is not enough to go round.
I will do a real journal club on papers I’ve read on the weekend later.