I Want People To Be Aware Of How Scared I Am Of Getting Ill Again.

pexels-photo-2225771

It’s World Suicide Awareness Day. Or week, or month – I forget how long this empty virtue signalling exercise goes on. And I thought to myself, as a survivor of more than one serious suicide attempt, what do I really want people to be aware of?

I want people to be aware of how scared I am of getting ill again.

Some background: I was in a severe mental crisis for about 16 months of my life, from January 2016-April 2017. I have severe episodic depression, which makes my obsessive-compulsive disorder get very bad. When it flared up in January 2016 I thought I was a child murderer or molester. It is hell on earth, and I did not see a way out of it. Everything was just a black hole of despair, the joy fell out of everything I was interested in. I didn’t want to do anything. Anyone who knows me knows how up for a laugh I am, smutty, sweary, irreverent, BUSY. When I was ill I was just a humourless void, a bit like a walking corpse. Lads, I was fucked.

Things got very bad at the end of 2016 and I was admitted to the bin three times – on two occasions attempting suicide due to various factors, but being weaned off opiates too quickly was one, and going onto antidepressants that didn’t suit me was another. These medication issues led to very bad akathisia (an inability to stop moving) which often leads to suicide attempts.

After the second attempt I ended up getting sectioned and spent over three months on an acute ward. You can read parts of my story over on my blog.

Anyway so I was really ill, right? And you’d think it’s the worst thing about being in recovery, that fear of getting that sick again?

It is, but not in the way you think.

The symptoms of the illness, as bleak as they were, are not the thing I’m most worried about if things go south.

[DISCLAIMER: I had a lot of help compared to some people I know, but the bar is extremely low. I am also super privileged: I’m white, educated, intelligent, with a stable family and partner who can provide for me. I have lots of good friends around me. I had work I enjoyed and valued to go back to. I’ve never had to deal with the DWP. I’m cisgendered, straight and physically abled. In my case I also won the postcode lottery in terms of getting access to the Centre for Anxiety Disorders and Trauma at the Maudsley Hospital, one of the only specialist centres for treating OCD in the country. AND IT WAS STILL ABSOLUTELY BLOODY AWFUL FOR ME.]

Here is why I’m really worried about getting ill again:

I’m worried about getting ill again because I might have difficulty even persuading my GP to refer me to the CMHT. I might end up with absolutely no help for a severe crisis where my brain is trying to kill me.

I am worried that if I am referred to the CMHT, I might only be able to see a patronising CPN once a week for three months, with very occasional psychiatrist meetings. Things the CPN said to me have included ‘Well, if you’re going to kill yourself it’s your choice’.

I am worried that if I present at A&E because I feel unsafe and I’m fighting an almighty battle in my head to try and not kill myself, I will likely be sat there for hours before a condescending member of staff comes and tells me to go home because I am attention seeking. Damn straight I’m attention seeking. I’m fucking poorly.

I am worried that if I get referred to the Crisis Team, they will probably come to my house once a day for a month for about 10 minutes at a time. They will tell me to do a crossword or have a bath when I tell them I feel unsafe and suicidal.

I am worried that if I go into an acute ward, I will be treated like a child, punished for harming myself, and patronised beyond belief. I will be assumed to have so-called ‘Borderline Personality Disorder’* and ‘punished’ by staff accordingly. I will be completely at the mercy of whichever staff are on the ward on a given shift, and whatever patients are in at the same time as me. Patients I developed real beef with while in there last time might also be there (you end up falling out over stuff like ‘who gets the jacket potato for lunch’ and ‘who gets to choose which channel the telly is on’, because you revert to being a toddler). Staff I complained about after I left might be there. It scares me shitless.

I am worried that if I need to access my specialist treatment centre again, there will be a six month plus waiting list even after I am accepted on assessment. This nearly killed me last time.

I am worried that if I need to go off work again, I will have to deal with Occupational Health. This has been both a positive and terrible experience for me at different times.

I am worried that if something happens to my partner and/or parents, I will have to deal with the DWP in order to be able to eat. This is unlikely, but possible.

All these worries are actually scarier to me than the symptoms of my illness.

Please stop telling us to ask for help, and start thinking about how society and the psychiatric system needs to change in order for people to receive the care and help they need.

I ‘recovered’ despite the system, not because of it.

by Jo Edge @hagenilda

*I’m aware this is a very controversial diagnosis and do not wish to denigrate anyone’s experience.

Please also see RITB Position statement on BPD

Positivity, Terrorism, & Neorecovery

clown happy

The imperative to be positive, to have what is lauded in the workplace under neoliberal capitalism as a ‘Positive Mental Attitude (PMA)’, has seeped into every area of human life, and it is terroristic. The obligation to wrap up one’s distress in a gift box with a pretty ribbon, to mask the absolute horror show that can be bestowed upon some of us in the form of mental torment, is nothing less than a violence. As we have learned from those who are subject to racism and intersecting oppressions, it is what these things do to the psyche, the way they get under the skin, into the marrow, and woven into the very fabric of our selves, that does the most damage. It is a colonization of the mind.

The positive police have set up shop in every mental health service. We should write gratitude lists, mindfully eat raisins, HOPE (help other people every day), list our strengths on care plans, and think about where we might want to be in five-year’s-time when the next hour feels unsurvivable. My current care plan asks me to document my long term goals and how I will achieve them; the boxes to fill in read like an appraisal form, or something to put in a personal statement in which I try to convince someone I deserve a particular position. The form used to be about the difficulties we experience, what help we need – not an instruction to account for oneself and how we might materialise the things we want out of thin air, driven by pure (and probably literal) hunger for it.

I run a writing group for people who experience ‘psychosis’. Last week one of the members was trying to write something based on a prompt I gave them and said, apologetically, that she had nothing positive to write. I was a bit startled because I have never asked them to write in a particular way, and certainly not to write with their positive pants on. I said that the group wasn’t a space that demanded positivity, but was a space in which to be real with yourself and others, to the degree with which you are comfortable. Her reply? “That makes me want to cry”. Her response made me want to cry. And shout. What are we doing to people that we feel that unless we can speak positively we shouldn’t speak at all, particularly about the reality we experience? This violence rips words from throats; puts a sterile spin on the diverse range of human experiences; whittles us away to silt; isolates; individualises; and expects us to swallow patronising platitudes in the name of ‘recovery’ so that we may be deemed worthwhile (read: productive) subjects.

I don’t want to go all John Lennon on you, but imagine if we let people be. Imagine if we accepted that it isn’t wallowing and being resistant to treatment to be honest about how we feel? Imagine if we were willing to hold that space for people with care, and to sit alongside them in it. Imagine if we decolonised the narrative, stopped asking people to superficially cover wounds that need suturing and healing from the bottom up. Contrary to neoliberal propaganda, of which the recovery discourse is fast becoming a sacred part, this doesn’t cause people to be stuck in a sick role and too dependent (whatever that means given we are all dependent on others), but allows for the possibility of being seen, being accompanied, and possibly moving through it with help.

Interestingly, the group member I mentioned above, though speaking of her fears and upset of the previous two weeks, wrote a very positive poem. I am not convinced this is because she miraculously felt that way, but because the obligation to be positive has hijacked her from the inside. Violence isn’t always bloody.

– Eleanor Higgins

Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International(CC BY-NC-ND 4.0)
License 88x31.png

Unrecovery As KerPlunk!

3mgi-fpr07_2

We have all played Kerplunk I hope. But as a recap there is a tube with holes, sticks are crisscrossed holding up some balls, and the trick is to remove the sticks without all the balls falling.

Our mental health is like a game of Kerplunk, and our issues are a combination of the balls and sticks. ‘Recovery’ is the ability to remove the sticks without the balls falling. As a slight adaptation to this analogy some of the balls can be removed by moving sticks, and ‘life’ adds balls all the time. The sticks are ‘safety’ adaptations that stop all the balls falling at once.

This game of Kerplunk is mostly played by us alone (in our own minds), so in this analogy the game is played in a room on your own. But we can always hear people telling us which sticks we ‘should’ remove, whilst we are sitting there looking at the problem, even though these people are not in the room with us. Government policy also demands we remove sticks, and moreover can add balls (as can other aspects of life), as well as remove sticks if we don’t keep an eye on them.

Unrecovery practices are an ad hoc practice, that is a temporary solution to keep control of our own Kerplunk game, knowing that a wrong move can send all the balls falling. ‘Bad’ recovery is one size fits all and insists on this or that stick must be removed, and then blames you when the balls fall. ‘Good’ Recovery, and other therapeutic practices, listens to your knowledge of what you can see of the game, and merely supports you with your autonomy whilst you play the game. This latter ideal however from our observation seems to be at odds with current government policy and market/ capitalist needs, as it doesn’t meet the outcomes measures of outside forces.

For those who don’t know the term, that I have added some changes to the games with sticks and balls being added and removed whilst you play, like a Heath Robinson machine, is what is called an assemblage. Unrecovery is an ad hoc practice with which to deal with such an assemblage.

Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) License 88x31.png

What is Recovery? Who defines it? Why am I unrecovered?

Screen Shot 2019-04-26 at 16.46.47

What does recovery mean to me? Well, after thinking about this for many days, the simple answer is that I have no idea. I don’t know what it might be like or feel like. What am I supposed to be recovering from? How do I recover? I’m not sure I can recover from some of the things that have happened and are happening to me. Neither am I sure I actually want to. I realise that the reason it’s hard for me to define recovery in my own terms is because the word has been so trampled over. Recovery has been sold to me by the MH system and other organisations. I’m bombarded with positive affirmations and stories from those who have recovered. I’m regularly told that I can recover but not how this is actually possible. Care Plans are now called Recovery Plans, Peer Support Workers are called Recovery Workers. I’m expected to fill in a Recovery Star before and after a MH crisis. I’m told I should go to the Recovery College. I see that being employed is linked with recovery.

I feel sick! I feel that I haven’t tried hard enough and that I am to blame. The oh so familiar feelings that I can’t label and that I have had since I was a kid return. Uuuurgh. I don’t choose to be unrecovered. Yet, I long for this thing they call recovery and am pleased for those that have recovered. It’s complicated and confusing. I think it has something to do with power, privilege and opportunities. I wonder whether to delete this sentence as I don’t want to offend anyone. I decide to leave it in for now.

I decide to look for a definition of recovery online. I look at a Trust Recovery Strategy:

“Our purpose is to create a culture and context in which people can recover: to provide interventions that enable people to take back control of their lives, to believe in the potential of everyone we work with so that they too can feel hopeful about their futures. We give access to opportunities so that people really can live the lives they want to lead.”

“Recovery can be seen as a process and can be most helpfully defined by three core concepts: hope, control and opportunity.”

I start laughing out loud to myself. I have none of these three things. One of the reasons that I’m unrecovered is because of the mental health system itself. This hostile environment is not a culture conducive to recovery. In my experience it has actually got worse and I don’t see it improving any time soon. How can I recover from having the shit and sticky label of ‘Bullshit Psychiatric Disorder’ slapped on to me two and a half decades ago. A label that is tantamount to saying that my difficulties come from within myself? I can’t get it changed or updated to CPTSD. I’ve tried. I’m told I’m lacking insight and that I’m failing to accept my diagnosis. My anger and complaints are pathologised as so called traits of a disordered personality. The label and all that comes with it is are the complete opposite of helpful and has led to neglect, abuse, and cruelty. I need a diagnosis to enable me to get support for my difficulties and for the best chance of getting welfare benefits. It’s MH services themselves who decide when to discharge me and this could happen at any time for failing to engage or for not recovering.

The childhood trauma I suffered has been ignored and in many ways I’m seen as a walking diagnosis and a set of symptoms which limits the choices of therapy I can access and how I am perceived as a human being. The group therapy I have had so far (DBT and Therapeutic Community) did not help. It made me feel worse. The few professionals that do understand say they are as frustrated as me about the MH system. How could they be? How do I recover from an illness I never had? How do I recover from childhood trauma when I have had no specific meaningful help to do this, and still feel like a victim and not a survivor? There is no specific trauma therapy as standard in the Trust and I have been turned down for funding by the CCG because of my ‘BPD’ label. I think about what recovering from incest would feel like. I don’t know. I wonder whether if I did recover, would this mean that I had forgiven my abuser? I don’t want to. I wonder how I can recover from the suicide of my little bro. Does anyone recover from something like this? If I did recover would that mean that I never think of him?

How do I recover from ongoing iatrogenic harm? The powerful, coercive, and controlling nature of the mental health system has caused me to be locked up many times against my will, sometimes I now realise illegally. I’ve been on a cocktail of drugs with no informed consent for decades that are contrary to NICE guidelines. I have had no support to taper and stop these drugs from services despite asking for many years. I’ve been restrained several times. Threats of MHA assessments, threats that if I don’t turn up for appointments that the police will come looking for me. My daughters have been contacted on several occasions and told to look after me 24/7 until a bed can be found and to call the police if needed. Our relationship has been ruined. I can’t recover from the continued loss of my human rights. How do I start to be kind to myself when the people who were and are supposed to care for me have and still do hurt me so badly?

How do I recover from transphobia? I’ve been told by professionals that I have ‘BPD’ because I am transgender or that I am transgender because I have ‘BPD’. The Trust do not follow their policy for Transgender Patients and I am doing my best to inform the professionals I see about transgender issues as I have not met any who understand. They need more training especially surrounding the way gender dysphoria and transphobia can affect my mental distress. I was outed as being transgender to my family by a MH professional who thought it a good idea to change my name on the system without thinking to ask my permission. My daughter was contacted as my nearest relative when I went AWOL from a locked up place. My family knew that I was transgender I’m sure, but I was gently and sensitively leading up to telling them in my own way and in my own time. They now equate a mental illness and a time they thought of me as completely crazy to my being a trans guy. They do not accept that this is who I am and always have been. Our relationship has been further ruined.

How do I recover from the coercive welfare benefits system and the doom filled feelings that come with this? DWP assessment processes, the fear of the brown envelope through the letter box, the sanctions, being investigated for fraud. Trying to prove to them that I am not able to work and that my difficulties are severe enough to get enough social security to survive on. The push I see from the Government to get everyone back into employment whatever the cost and that apparently work is good for my mental health and aids this thing called recovery. The fear that I may lose some of my disability benefits at any time which may force me into work when I simply am not able. This would lead to sanctions and debt and possible homelessness. How do I recover from the fact that I can’t afford to pay for therapy that may well help me? How do I recover from the fact that the Personal Budget I receive to employ a Personal Assistant to support me has decreased to almost nothing? The one thing that has helped me to be in control of having some sort of quality of life and social inclusion?

I still have no idea what recovery means to me or what it might be like or feel like. This I realise is because I am unrecovered. I can’t see that changing anytime soon. I do know that I have given up on the idea that I should live up to the definitions of recovery from others and the false ideals of what people think I should be and should do. I’m sometimes asked by professionals “what do you think would help you?” My answer remains the same as it always has been “To be dead”. But I’m not dead and I’m here aged 58 writing this blog. It’s painful this thing called ‘life’. I realise that I am privileged because I can and want to write down my own story of unrecovery and I think of the many that don’t want to or can’t. I think of how other people’s stories will be different to mine. I think of those who are not alive to tell their stories, some whose blogs I have read and some who didn’t get to write down their words.

I think it’s important that the stories of those that are unrecovered are heard. People like me are not invited to do keynote speeches at conferences or events and to be honest I feel too unrecovered to do so if asked. I can’t attend events to get my unrecovered voice heard unless they are free and travel expenses are covered in advance. I’m not the kind of service user who is included in co-production. Does anyone actually want to hear from the unrecovered? Could they learn anything from us? The drive towards this thing called recovery by the many powerful ones that don’t help me to recover is catch 22. I’m fighting to take back some power hope, and control but it isn’t working and this leaves me feeling suicidal. I wonder whether the words I have written will make sense to any of you reading them? I wonder whether people will comment to say how I should define recovery and how to work towards it? I don’t want my story misrepresented or twisted to fit into someone else’s narrative. It’s my story not yours.

By G

Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) License 88x31.png