I. Am. Not. My. Diagnosis....(Some (Personal) Do's and Don'ts of Lived Experience Involvement)

Since I received a diagnosis which gave me access to Mental Health Services, I have spent a number of years being asked to 'be involved' with different projects within my local NHS. Some of them felt effective and useful, but many despite initially being a positive way to improve services for others with similar experiences have fizzled out - or come to an abrupt end, with little or no feedback to me regarding the reasons for the project ending.

Over the years I have come to the conclusion that the main reason for mine and others' with Lived Experience ending up being discounted, lies in a strange dissonance between Professionals' belief in encouraging self management and self advocacy for 'service users' and an aversion to risk. Usually this is articulated as concern for the fragility of 'Peer Workers', statements around avoiding 're-traumatising' me when I am asked to use my experience to inform my perspectives on Mental Health Services.

Above all, I think the main hurdles to true involvement for those of us with 'Lived Experience' lies in assumptions around individual diagnoses. Unlike medics who deal with physical well being, there are few direct treatments which act as 'magic bullets' to 'cure' mental ill health. There are few commonalities in causes even of the most commonly diagnosed mental health conditions. Nor is there often consensus among professionals about the most effective interventions for everyone with the same 'Label'. Mental Health is so challenging because we need to address issues of the whole life. Assessment may take months, or even years to provide clear understanding of my complexities, let alone begin to help me manage my condition so that I can achieve a 'life worth living'. To understand the risks of my condition, means that you need to understand me as a whole person. To learn to respect my recovery journey means understanding what works for me in managing myself so that I can function effectively. If I am in Recovery and I believe I have something to offer to your project, please trust me to know myself, my risks and what works to restore stability. If I take on the role of colleague, then I do not ask of colleagues therapeutic support, anymore than if I were working in any other context.

As with most aspects of Mental Health, much can be solved by addressing assumptions and expectations - on both sides. My experiences have led to me developing some Do's and Don'ts for helping make my involvement effective for both.

Don’t overpromise – if I have had a good experience of services any inability to deliver on what you have promised will erode any trust. If I have had a poor experience it will reinforce my lack of trust in the NHS as a whole.

Don’t get me to commit to projects without everyone involved being in agreement. I cannot tolerate conflict when seeking to rebuild work confidence. Nor can I on my own change an organisation's culture.

Don’t ask me to go through recruitment procedures, unless there is a definite green light.

Don’t tell me you will be in contact, then fail to make any contact. If there is a vacuum in communication I will fill it with my self-critical beliefs that I really am useless and unwanted.



Do keep me informed of delays/concerns about NHS policies and procedures.

Do be honest with me about the challenges of changing staff culture and assumptions about working with people with Lived Experience.

Do give me the opportunity to talk directly to staff on teams/departments who are considering peer roles. Hearing real stories and meeting real people challenges stigma.

Do trust me to manage my own condition – I am not relying on colleagues to be part of my recovery plan and that needs to be made explicit.

Do make role descriptions and remuneration clear before engaging me in any work voluntary or otherwise.

Do be upfront and honest with me if you have any concerns about my wellbeing and then expect me to be responsible for putting my Recovery Plan into action.

Do be honest if there are organisational/policy changes which will affect my continued involvement – try to give me as much notice as possible so I can adjust. As much as I try any ending that is unforeseen will feel like an immense rejection and may impact negatively on my feelings of self esteem.

The Power of 'Yes'

Of all the skills and habits learned during Dialectical Behaviour Therapy (DBT) there is a small but significant concept known as 'willingness'. When I first came across it in a group skills session, I immediately linked it to my willingness to engage in the DBT process. However, after some years of recovery and reflection I can see that it goes so much deeper.

As an English student I challenged myself to read James Joyce's Ulysses....bit of a pretentious phase, but the sense of achievement paid off the effort. One of the episodes that make up this epic novel is called 'Molly Bloom's Soliloquy'. It is 50 pages of unpunctuated, stream of consciousness as Molly lies in bed thinking about life. 'So what?' I hear you say. 'What do you want? A medal?' The point of mentioning this 50 page 'sentence' is that, for me, the most significant part of this piece of writing is that the 50 pages begin and end with one word 'Yes'. James Joyce believed that 'yes' is the most positive word in the English language. And that brings me to the heart of what willingness has come to mean to me.

It means saying yes to leaving the past behind. Saying yes to trying new ways of coping when my old self destructive ways have proved ineffective. It means saying yes to being part of something....accepting invitations to begin new friendships. It means saying, yes to giving human beings a chance when humans have proved to have caused me most suffering in the past. It means saying yes to the reality that I am made to be in relationships with people. It means saying yes to accepting that people can see good things in me and may want to get to know me. It means saying yes to something or someone who is bigger than me and my problems. It means saying yes to belonging and feeling that I belong after years of feeling like an alien. When I was able to leave behind the constant feeling that I wanted to escape this life and instead said 'yes' to keeping going, no matter how difficult I may find it, the power of 'yes' began.

Yes releases me to say No to those things in my life that are self destructive. Yes enables me to say No to people who prevent me from taking part in life as it can be. Yes releases me to say No when I feel pressure to do things I don't want to do, because I fear rejection.

The power of yes is not contained in any magic formula. The word 'willingness' gives the key. Saying 'yes' to changing life so that I can stop being managed by traumas from the past, or the fluctuations of moods and circumstances, means actively willing myself to choose the positive. Saying yes to life may cost at times, but it must always be weighed against the cost of choosing not to embrace 'yes'.