Thread by @RaiWaddingham

I had the honour of speaking about my experience of the schizophrenia dx on @MichaelRosenYes's @BBCRadio4 #WordofMouth episode with the awesome @nathanfiler, edited by @SalHeartsBooks. Some have asked why I don’t identify with the dx, even tho it ‘just’ described my symptoms.

Schizophrenia is - in one sense - just a word, but it is a word with history, multiple meanings and many consequences.

A thread: 🧵👇

I was given the diagnosis of schizophrenia at a particularly vulnerable time in my life - I was at uni, struggling with the impact of childhood trauma and a major change in my life. I was lost, confused and desperate for answers.

At first schizophrenia seemed like an answer. It promised understanding. It fit my experiences and helped give me (and my loved ones) a reason for my struggles. It gave me access to benefits and treatment. It made sense, back then, that it was something I’d just have to live with

In the early years my problem with the diagnosis wasn’t the word itself, it was what it meant to people out there in the world. It placed me firmly in the camp of the ‘other’ … it framed my experiences as ununderstandable, dangerous even.

The stigma around the schizophrenia dx endures attempts to reduce it. It’s relational. Someone might be OK with me existing in the abstract, but would they really want me as their partner/daughter-in-law/colleague/babysitter?

At that time my focus was on adaptation, on fitting in. I found ways of challenging stigma with humour. Yet, through all of my smiles I was ever aware that there was also a base layer of prejudice and discrimination that was immune to my charm.

In time, the diagnosis of schizophrenia itself became a problem. It promised understanding but clouded my efforts at meaning making. Professionals encouraged me to accept sz and the blanket label of ‘stress’ as the reason for my repeated episodes. No-one dared look deeper.

This fear of exploration, and fear of the voices I heard and the beliefs that overwhelmed me, left me in a painful stasis; I was unable to move forward. The idea, communicated through a Hearing Voices Group I attended, that my experiences might have meaning was a breakthrough

The more I learned about the schizophrenia diagnosis, the more I began to question it. It gave me a surface level answer to a question that had much more generative responses. I shelved it, it was part of my world, yet I wanted to look more widely at how I came to be where I am.

I am a survivor of trauma (both before and during my time in mental health services). My voices can be hard to live with, but they contain breadcrumbs of meaning that I can learn from. My beliefs can be intense, but they too contain truths that have been part of my healing.

In its essence, I don’t think there’s anything in the word schizophrenia that stops me from making sense of my experiences. Yet schizophrenia is more than a word, it is a story that has been told about my experiences that is voiced by people with more power & credibility than me.

Schizophrenia is not a neutral concept. Its impact weaves through my life in a myriad of ways. It affects how I’m perceived as a mother, a witness and a member of society. Even now it can be used to limit my rights - rights others take for granted.

What does protect me is my privileges - my colour, my age, my education, my class. Others perceptions of me mean I have avoided the some of the harder edges of mental health system. Yet, even with my privilege I’ve still been held down and injected.

So, here I am - lucky in many respects. I choose not to identify with the label of schizophrenia for many reasons. If we ever share a coffee I’d be glad to talk more about it. It’s more complex than I have space for here. But I hope I’ve given a flavour of what it means to me.

Note: I do not speak for all who have this diagnosis (just in case that wasn't obvious). It's OK for everyone to have their own relationship to their own stuff. The key, for me, is that we need more spaces where our experiences and perspectives can be heard and respected.