Dear Mental Health Carers and Supporters,
Please would you take the time to read the article below– I was moved to tears when I read it – what do you think?
Irene Harris – Chair – Mental Health Carers Group Stockport Tel : 07977 606 543
“It’s nothing like a broken leg”: why I’m done with the mental health conversation
On Sunday, one of our members sent me the link below, to this “un-put-down-able” article from the Guardian written by a renowned journalist, Hannah Jane Parkinson, who has suffered from mental illness since the age of 13, she’s now 28. And please don’t tell me not to use the word “suffered”, or I will use another word – remember as a mental health carer, I see my loved ones suffer most of the time and will probably do so until I die – worried sick about what will happen to them when I’m gone.
The article is very long – 7 pages – so it’s probably best for me just to copy here the excellent points which she makes (from experience and understanding) and just to say that they agree with what we have been trying to say (but not as eloquently) in the Mental Health Carers Group Stockport for the past 7 years:
1. Mental Ill health should not be treated as a “One size fits all”
2. We need more staff and more specialist staff who know what they’re doing and are hungry to learn more.
My heart breaks when I read the ending of the article, I think of my son when Hannah says, “Because more than talking about it, I want to get better. I want to live.”
I’ll hand over to the eloquent Hannah Jane – but do please read the whole article as well and let us know your thoughts.
Thank you Irene MHCGS
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 good that Lynx deodorant teamed up with the male mental health Campaign Against Living Miserably, but is “Find Your Magic” not the most patronising slogan of all time?
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. 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.
I am no longer under the care of a named professional to review my medication. After the sectioning and the 22-hour wait, there was a hospitalisation out of borough. Upon leaving the inpatient ward, there was a two-week stay at a crisis house (which helped), then that was it. I was ill enough to be sectioned, but well enough to have therapy discontinued. I was put on an 18-month waiting list for therapy. I called iCope, an NHS digital therapy service, but because I was on a waiting list, I was ineligible.
It took me about 16 weeks to get back to work – much longer than it should have done – because I had to clamber from a well without ropes. I would run into GP surgeries, suicidal; the receptionist said he would “pass the message on”. I sat in the consulting room, sweater over my head and howling.
Since I was sectioned, I have been hospitalised twice, once after a suicide attempt. I am still on a waiting list, a different one: this one is two years long. My friends and family simply do not understand the delay, cannot believe it when I tell them about the system. So, clearly, the Conversation isn’t as illuminating as it thinks it is.
I will admit that I am not well. That writing this, right now, I am not well. This will colour the writing.
But it is part of why I want to write, because another part of the problem is that we write about it when we are out the other side, better. And I understand: it’s ugly up close
The primary danger used to be glamorising. It was cool to be a bit mad. It meant you were a genius or a creative. It wasn’t just that certain mental illnesses were acceptable, but certain mental illnesses were acceptable in certain types of people: if you had a special skill or talent or architect-set cheekbones. All of this remains true. Sure, Robert Lowell, great poet. Madness excused. Amy Winehouse, voice of a goddamn goddess. We’ll allow. Kathy, 54, works at Morrisons.
But now there is also a new danger. It is “normalising”. This is meant to be a positive – as in, “What is normal, anyway?!” Which is a fair question, but I don’t think it’s the woman who crept into my inpatient room, stole the newspapers I had, found me in the lounge and ripped them up slowly in front of my eyes. I don’t think it’s me, sitting in a tiny, airless hospital room, carving my name into the wall with a ballpoint pen, with three guards for company, one of whom later tries to add me on Facebook.
We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.
Don’t pathologise normal processes such as grief, or the profound sadness of a relationship breakdown, or the stress of moving house. Conversely, don’t tell me it is normal when I go from being the type of person who will offer children piggyback rides up the steepness of north London to glaring at a crying baby on a bus. Or that it is normal to blow thousands of pounds on sporadically moving house without terminating a current lease, or to send friends bizarre, pugilistic texts in the night.
The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.
Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).
What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.
When I am well, I am happy and popular. It is tough to type these words when I feel none of it. And sometimes when I am most well I am… boring. Boring is how I want to be all of the time. This is what I have been working towards, for 12 years now.
When friends decades older tell me off for saying that I am old, at 28, what I mean is: I haven’t achieved all the things I could have done without this illness. I should have written a book by now. I should have done so many things! All the time, I feel I am playing catch-up. Always. I worry, and most of the literature tells me, that I will have this problem for life. That it will go on, after the hashtags and the documentaries and the book deals and Princes Harry and William – while the NHS circles closer to the drain.
Maybe it’s cute now, in my 20s. But it won’t be cute later, when I am older and wearing tracksuits from 20 years ago and not in an ironic hipster way but because I no longer wash or engage with the world, and it’s like: my God, did you not get yourself together already?
When I left appointments and saw the long-term patients, walking around in hospital-issue pyjamas, dead-eyed (the kind of image of the mentally ill that has become anathema to refer to as part of the conversation, but which in some cases is accurate), four emotions rushed in: empathy, sympathy, recognition, terror. It’s one of those things you can’t really talk about with authenticity unless you’ve seen it, not really: the aurora borealis, Prince playing live and the inpatient wards.
Maybe my prognosis will look up, maybe I’ll leave it all behind. I’ve noticed a recent thing is for people to declare themselves “proud” of their mental illness. I guess I don’t understand this. It does not define me.
It’s not something that, when stable, I feel ashamed of, or that I hide. But I am not proud of it. I’d rather I didn’t have it – so I wasn’t exhausted, so I wasn’t bitter about it – despite the fact that I know some people, in all parts of the world, are infinitely worse off.
I want it gone, so that I am not dealing with it all the time, or worrying about others having to deal with it all the time. So I don’t have to read another article, or poster, about how I just need to ask for help. So that when a campaigner on Twitter says, “To anyone feeling ashamed of being depressed: there is nothing to be ashamed of. It’s illness. Like asthma or measles”, I don’t have to grit my teeth and say, actually, I am not OK, and mental illness couldn’t be less like measles. So that when someone else moans about being bored with everyone talking about mental health, and a different campaigner replies, “People with mental illness aren’t bored with it!” I don’t have to say, no, I am: I am bored with this Conversation. Because more than talking about it, I want to get better. I want to live.