depression

Let’s keep on keeping on

We’ve had a mini mega-burst of mental health media already this week.

Surely a self-confessed mental health campaigner like me ought to be pleased about all this increased profile? Actually I feel three things:

Frustration

I feel frustrated and very angry for my fellow patients and erstwhile colleagues because of the cuts in care, both statutory and voluntary, that have led to the only “safe” place for people who are very unwell being in hospital, and to every acute mental hospital bed being full. It is not only cruel for the patients, it is deeply counter-productive. The young woman with a personality disorder languishing in an acute ward in North London (whilst funders slowly cogitate whether she should get a more appropriate service) is deteriorating daily and her problems are becoming ever more intractable and corrosive. If she had cancer, people would be doing marathons and having cake sales to support her. As it is, millions of people like her are seen by society only for their deficits rather than the assets that may lie buried deeply but are undoubtedly there. Parity of esteem? We’re having a laugh.

Love and gratitude

I feel huge love and gratitude to brave people like Professor Green for dragging mental illness and the stigma of suicide kicking and screaming out of the shadows and into the sunshine. I was moved by so much in Suicide and Me , including the rawness and vulnerability of the rugby coach as he bared his psychological all about feelings of worthlessness and what he is learning to do to protect himself from suicidal thoughts.

Today, the day after the programme was shown, I have a regular Board meeting with Grassroots, the small but highly effective suicide prevention charity of which I am a trustee. I love my fellow trustees and the amazing people who work and volunteer for Grassroots. We know what Professor Green has discovered for himself: suicide thrives where there is secrecy and shame. One of my shameful secrets used to be all those times in my life when I faked physical illness because I couldn’t get out of bed for feeling so hopeless, helpless and full of self-hatred that I wanted to stop living. It’s still very hard to ask for help, but many times easier now that I’ve outed myself. Bringing these shameful secrets into the sunlight and talking about them is our greatest tool to keep ourselves safe and to live a full and beautiful life in recovery.

Responsibility

I listened to All in the Mind this morning on iPlayer as it clashed with Suicide and Me. I salute the wonderful Claudia Hammond for dedicating her first programme of this series to young people’s mental health. I’ve written before about my concern that there is a lalala-I’m-not-listening response to the considerable increase in demand for children and young people’s mental health services. The programme takes a forensic interest in trying to find the reasons for this rise. There are various theories, mainly societal and social, but no conclusive explanation that could be used to stem the demand.

For staff working in these services, there is great anxiety – that they will miss someone extremely vulnerable, that the treatment they are giving is not sufficient, that they are spreading care and themselves too thinly. The pressure can feel close to unbearable.

We should be indebted to those who speak up about the challenge of working in mental health these days, like those on All in the Mind and the staff and leaders at Barnet Enfield and Haringey Trust on Panorama. Their courage and compassion shine.

These programmes stir up triggering thoughts and feelings in those who are susceptible. Social media can be a great source of support,  but only if you are open, which also increases vulnerability. Twitter and Facebook have been very active this week.

I’ve had many thoughts myself. And I’ve come to a decision. I have more to give. I’m going to look for new ways to continue to tackle the stigma that affects not only those of us who experience mental illness, but also the availability and capacity of services to be able to tackle problems early with effectiveness and kindness. Watch this space.

And in the meantime, here’s to everyone who does what they need to do to keep on keeping on.

Go us xxx

 

Please do this and please don’t say that

Since coming out about my on-off relationship with depression, I’ve lost count of the number of people who’ve asked me stuff and told me things. Some have been extremely helpful, some not so much.

Here’s my handy guide on what not to say to someone like me:

  1. Please don’t ask “So why do you think you get depressed?” If I knew that, I’d fix it. I’m trying to find out, but it’s a work in progress.
  2. Please don’t say “Have you thought about exercise?” You bet I have. And now I’m in recovery, I’d love you to come for a walk or bike ride with me. And see if you can keep up.
  3. Please don’t say things like “When I retire, I’m worried I might get depression like you did. How can I avoid it?” I don’t know! What I do know is that depression isn’t caused by one thing. If you’ve got to this stage in life without experiencing it, chances are you never will. But I can’t make any promises.
  4. Please don’t say “When I get depressed, I always…. (insert favourite pastime/exercise/indulgence.)” Thanks for the information, but you haven’t had depression. Or you wouldn’t say that.
  5. Please don’t say ” Do you think talking/writing about your depression might make it worse/bring it on?” No I don’t. Sure, exploring this stuff is painful. But psychological wounds are like physical ones. They won’t heal if you simply cover them up. They will fester. To heal properly, wounds need sunlight and oxygen. Being open is the antidote to the nasty old stigma which makes people who don’t experience mental illness feel embarrassed about it and people like me who do feel ashamed.
  6. Please don’t say “I never thought of you as the sort of person to get depression. I always thought you were so strong.” Yes. And that’s part of the problem. If you read Tim Cantopher’s Depressive Illness: The Curse of the Strong, it will help to invert your thinking about depression. As it did mine.
  7. If I’m not on medication, please don’t tell me that I should be taking it. If I am, please don’t pass judgement, or ask if I have thought about talking therapies instead. And please don’t call antidepressants “happy pills”. People with physical illnesses such as cancer or heart disease don’t need well-intentioned, uninformed amateurs to opine on their treatment. People with mental illnesses are the same. It is neither good nor bad to take medication. It is just sometimes an essential part of getting better or staying well.
  8. Please don’t say “You seem too jolly/optimistic to get depression.” Again, do read Tim Cantopher. Depression is rarely a permanent state. For me, the stark contrast between how I feel when depressed and my state when well is close to unbearable.

Depression isn’t the same thing as sadness. In my case, it is a combination of self-loathing and emptiness. But we are all different. See my letter to you for further info. It includes the details of the book I mentioned above.

Having listed some Please Don’ts, here is a precis of what I have found, through experience, really helps.

Do please:

  1. Hold my hand when I need it
  2. Be patient
  3. Listen carefully and don’t overreact
  4. Resist judging
  5. Encourage me to seek professional help if I seem to be going round in circles
  6. Tell me you won’t allow me to let this thing define me
  7. Avoid defining me by it yourself
  8. At the same time, allow me to incorporate it into my life.

Like anyone who experiences any form of mental illness, be it lifelong or more fleeting, I am so much more than it. But it is also part of me. I am learning to accept this, as I hope you can too. Not for me, but for the 1:4 people who experience mental illness from time to time. Because this is the only way we will truly eradicate the stigma that so besets us.

Thank you for your kindness in reading this. It means a lot.

Welcome back

Hullo you.

So you’re back, are you? Please forgive me if I haven’t exactly laid out the red carpet. It’s just that the last time you were here, you caused havoc. It took me a year to deal with the consequences. You wore me out. My family and friends were extremely glad to see the back of you. My own feelings, as you well know, were more mixed. Because I recognised that you had, quite literally, become part of me.

What I can tell you, as you so cleverly insinuate yourself back into my life, is that I’m better prepared for you this time. I’ve done a lot of soul – searching. And I’ve had professional help. I have slowed down my thinking, and learned the painful lesson of sharing, with a few trusted people, that I’m not always OK, and in particular the devastating effect you can have on me if I don’t take care.

I’ve also made some new friends, who know you too, or someone like you. At great personal cost, they have developed ways of living in harmony with their cruel demon. I am indebted to the generosity of these new friends. I am even grateful to you, because, were it not for your last, most shocking visit, I would never have met these extraordinary people.

I have again only recognised your arrival with hindsight. A disapproving little voice whispering in my ear at my 60th birthday party, at the very moment I told those closest to me that I had finally got my mojo back, saying: have you? Have you really??

This makes me question myself. Was I pretending, all those months after I thought you’d left? Faking it till I baked it, as the saying goes? I don’t think so. Because faking is almost impossible with you around. My razzle-dazzle, such that it is, fades in your presence. My smile becomes less convincing when it is painted on. Plus, and this has been a very important lesson, pretending not only hurts me. It does damage to others.

This month, you appear a few times, in the small hours, when I should be turning over from the first refreshing sleep of the night and falling quickly back into the next slumber. Instead I become alert and watchful. At these times, you make me go over past failings, magnifying them out of all proportion. In the mornings, there you are again, a dank blanket, ready to spoil the day. Not every day, but enough of them to make me worried that soon, you might not be leaving.

Most wicked one, you mess with my head. You have ways of making me feel responsible for everything that has ever gone wrong that I have had remotely anything to do with, and for not doing enough to solve the ills of the world. You force to me go over and over stuff that makes me feel bad or sad, and guilty for my luck at any of the good things that have come my way. You tell me I am undeserving, selfish, lazy, intellectually weak, self-indulgent, tedious and evil.

And I believe you, to some extent, but not quite so much as before. Because I have learned about your psychological tricks. In a straight fight, I know you will always win. I need to listen to you, because occasionally you are right. After all, you are merely an extension of my conscience, aren’t you? I just mustn’t try too hard to placate you, or listen so much that I stop hearing others who speak more kindly to me.

As I’ve grown older, I’ve tried to take myself less seriously. To be less certain and to listen with greater care. And I’ve learned that to be kind to others, which after all is the whole point of having been put on this earth and being human, I must first be kind to myself. So I’m trying more of that now, mainly in my internal world, but also by sharing how I am feeling with those close to me and some of my newfound friends.

I’m not going to try to banish you from my life. I can’t; you are a part of me. But please don’t get big ideas. You are only a part. Despite your mean little voice telling me I don’t deserve professional care, I have again sought it. It is already helping. But in the end it’s up to me, and only me, whether I allow you to become my defining feature. I am determined that you won’t be. To achieve that, I must also never again pretend that you don’t exist at all. That is why I am writing this blog, for all to see. I will face you, and not allow you to win by making me feel ashamed of your occasional visitations. There should be no shame.

Welcome back, my friend. Today the sun is shining, and you are quiet. But I know you are still there, waiting for me in my weaker moments. And I’m ready for you.

I hope.

 

 

Nobody said it was easy…

My last blog was about the launch of the Time to Change project, working alongside two volunteer mental health trusts to tackle the stigma within mental health services. It got lots of positive comments. And a few negative ones.

In the interests of improvement, I thought I’d share the latter, see what I can learn from them and also offer my response.

The comments fall into three broad categories.

1.People who do bad things need calling out. That is the essence of accountability. This project ducks the issue.

I understand what you mean. And I agree. If someone has done something wrong, they should account for their actions. That is what any fair and just system is based on.

But…We are talking about attitudes. And it isn’t possible to change these by telling people they are wrong. And shaming or even punishing them. It doesn’t work. It can actually entrench those attitudes.

The Truth and Reconciliation Commission in South Africa recognised this. It sought to use compassion and forgiveness to build bridges between groups who had done terrible things to each other. Archbishop Tutu used the learning from this work to build his worldwide Tutu Foundation, which teaches mediation to troubled nations and groups. Underpinning it all is his belief that people are made for goodness.

Time to Change has worked on this basis since 2007. They use facts and compassion to help change attitudes. They have had significant, measurable success. This project is no different. Facing up to what is wrong is not ducking the issue. It is honest and truthful and has taken huge courage. Changing things requires sensitivity and compassion. And that’s how we will be working.

2.Teaching staff about mindfulness and compassion is bollocks. It doesn’t work. There is a “happiness industry” out there ripping public services off and laughing all the way to the bank.

I use mindfulness myself, and am proud that my ex-colleagues at Sussex Partnership have been offering mindfulness-based CBT and mindfulness meditation to patients and staff on an increasing basis for the past 5 years. It does work. There is a large evidence base.

But I agree it is not a panacea. Nor does it work for everyone. Mindfulness doesn’t fix poverty, a housing problem or unkind treatment from someone else. What it does is enable you to control your emotional response to such challenges and not allow them to define you.

Our project will use a range of methods to help staff bring their whole, most compassionate selves to work. It won’t duck from identifying the cultural, organisational and external factors which affect the delivery of compassionate care. And this won’t be easy. But we are determined not to paper over problems.

3.Someone like you (me) who has had an occasional bout of depression has no idea about the stigma of serious mental illness. Thinking you are helping by disclosing your own experiences is self indulgent shit.

You have touched one of my rawest nerves. I shared your view for many years, which was why I kept my depression to myself. Added to that, I truly didn’t believe what I experienced from time to time was depression. I thought of it more as my own moral weakness and laziness. Words like self-indulgent were designed to perfectly describe me.

But now I’ve had some really effective therapy. I’ve learned that I’m not a bad person. And that my response to distress and dissonance is to turn in on myself with self-hatred that is greater than anyone else can ever feel towards me. I become my own worst enemy. This is a major aspect of my depression.

It is true that I don’t have the longterm effects of an illness such as schizophrenia to contend with. But just because I’ve managed to muddle through my life and have achieved a few things despite not infrequent bouts of depression doesn’t mean it has been easy. Judging me for not being more disabled is pretty sick, when you think about it.

So I’m going to continue being open about what I do to try and stay well, which I am at the moment, and about what it’s like when I’m not. And I’m going to listen to the thousands of people who have told me that coming out has helped them be more open. Rather than the handful who judge me as self-serving.

At least, that’s what I will try to do.

I’m looking forward to sharing these thoughts with members of the project working group and to hearing their own experiences and challenges. I’ll keep you posted on how we are doing.

And my final thoughts? Nobody said this project was going to be easy. But nothing worthwhile ever is.

No them and us. Only we

Some people call antidepressants “happy pills”. I’m not keen on this description. In my experience, they slice the top and bottom from my emotional range and I feel neither happy nor sad. Instead, they bring a calm which is welcome but can leave me feeling blunted, even flat. I know others describe similar effects.

Antidepressants helped me go back to work very quickly after my breakdown in November 2013. Skilled care from my psychiatrist and GP, timely psychological therapy, and the kindness of colleagues helped even more. Plus an over-developed work ethic. For those lucky enough to have decent jobs, going back to work and feeling useful can play a big part in our recovery.

I mention this because I want you to understand my state of mind on 24th February 2014, 6 weeks after I went back to my job at the time, running a mental health trust. Going back to work was probably the hardest thing I have ever done; one day, I hope to feel able to share why.

Anyway, on this particular day, I attended a round-table event arranged by Time To Change. Had I not been on my medication, I might have felt the need to challenge what we were being told. Or wept. Because I and the other NHS leaders present heard stuff at that meeting that we desperately wanted not to be true. And yet deep down we knew it to be so. It was like learning about institutional racism. Only this time, it was institutional stigma and discrimination from the services we were responsible for towards people who use our services.

We heard that, despite the measurable shifts in attitude of the general public (published in July by Time to Change for 2015 and again showing small but significant improvement), attitudes within the NHS haven’t shifted. In some cases, they have got worse. And the places where they appear most entrenched, as reported by those who know, ie patients, are within mental health services. And it rang horribly true.

From this meeting was born a desire amongst a number of us to do something to change this. Five months later, at my retirement party, I listed some of the things I planned to do with my new free time. One of them was to offer my services to Time to Change to help tackle this intrinsic issue within mental health services. And although I planned to earn a modest living writing, speaking and coaching others, I wanted to do this work as a volunteer. I felt I had something to pay back.

It has taken time to set up the project. But now it is underway. Time to Change are working with two mental health trusts, 2Gether and Northumberland, Tyne and Wear. Like me, they are volunteers. The trusts were selected because they could demonstrate their readiness at the most senior level to address stigma within their own services with integrity, hard work and, most importantly for me, compassion. On the working group, which I chair, we have reps from the two trusts, four experts by experience, our full time project manager, senior colleagues from Rethink and Mind who together are responsible for running Time to Change, and two people from a social research company who are doing the work on attitude measurement.

You can read more about the purpose  and details of the project here on the Time to Change website, including quotes from those taking part.  And Community Care have published a piece about the project today.

Stigma towards those who need mental health support is alive and kicking within the NHS. It manifests itself with lack of empathy towards those who self harm or are otherwise in crisis, as described in the recent CQC report; low expectations from clinicians about future prospects for people who experience serious mental illness; lack of investment in research into new treatments; marginalisation of mental health in the way the NHS is planned and organised; and unfair treatment of mental health services by local and national commissioners in their expectations and funding decisions.

But I have high hopes. There is an absolute acceptance amongst those involved in our project that things need to change. And that instead of simply asking people who work in mental health to be more compassionate, that the change needs to start at the most senior level. We have sign – up for this work from the very top of NHS England, Mind, Rethink, Time to Change and at the trusts. And we agree that for staff to work respectfully with patients and treat them with optimism, expertise and compassion, they need to experience the same from their colleagues, including their most senior leaders, their commissioners and their regulators.

It was a long time ago that I was told by a nurse that I was a waste of space and that looking after me after I had hurt myself took him away from patients who were truly deserving of his care. At the time, I absolutely believed him. It took me many years to unlearn what he said. And it nearly broke my heart to hear, at that meeting back in February 2014, that such attitudes are still relatively commonplace today. The difference now is that we are talking about them. And acknowledging a problem is the first and most important step towards solving it.

Please don’t just wish us luck. Please join in and help us tackle stigma towards people like me and millions of others who experience mental illness from time to time. I’ve been off my antidepressants for several months now. I feel like the whole me again, which has one or two negatives but is mostly pretty amazing. And whilst I am doing lots of things to look after my mental health in my new world, who knows if I will need treatment from mental health professionals again one day?

Because there is no them and us. Only we.

 

Lisa’s ten mental health rules

Rules are made to be broken. And anyway, these days we have far too many of them. Those who work in public services have little hope of remembering them all.

Despite all that, I wrote this list in tribute to the wonderful work of @nurse_w_glasses. And Moses. It applies as much to regulators, commissioners, leaders in NHS trusts, local authorities, private providers and charities as it does to frontline staff.

And all humans.

  1. Thou shalt always remember that the mind and the body are intrinsically linked. There is no health without mental health. And mental health is everyone’s business.
  2. Thou shalt always present a positive image of people who need help with their mental health. It is nothing to be ashamed of.
  3. Do not take the name of people who experience mental illness in vain. Never use terms such as nutter or psycho, even in jest. We may pretend we get the joke, but inside we weep.
  4. As with religious practice, working in mental health requires humility. Do not be dogmatic or rush to judgement of others. Instead, practise acceptance and loving kindness.
  5. Honour the people who choose to work in mental health, whatever career you personally have selected. They have not chosen the easy road.
  6. Killing other people is illegal. Killing oneself is not, but it carries huge stigma and casts a terrible shadow over those left behind. Learn how to help prevent suicide. And never condemn those who might consider it. They need your understanding if they are to seek help.
  7. Mentally ill people can be trusting and vulnerable. They may lack inhibition. Never abuse a position of power physically, sexually, financially or psychologically.
  8. Never treat people who experience mental illness with anything other than compassion and patience. If they make you feel angry or mean, get some help yourself.
  9. Try to tell the truth about mental illness and the current state of services. This is neither easy nor straightforward. They need serious attention and investment in the UK. There are no quick fixes. But relatively little will go a long, long way.
  10. Be hopeful about mental illness. Those who experience it from time to time can lead full and rewarding lives, with just a bit of love and support.  Like me.