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.
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