About Me

I am a young patient  activist, speaking openly about life with mental illness and autism. My activism includes public speaking, trying to affect change in mental health and/or autism services by contributing to relevant organisations, panels, committees and executive boards. I hope to break down misconceptions, stereotypes and stigma relating to mental illness and autism, and to create a future where mental health services are fit for purpose.

Want to hear me speak? Curious about my story? Think I could help you or your organisation to understand mental health and/or Autism?

Get in touch; Mair.elliott97@gmail.com

 

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  • Mair Elliott

The healer - passive patient dynamic

Last week I wasn’t feeling good, I was experiencing dissociative episodes, strong and urgent suicidal thoughts and self-harm urges, my sleep and appetite were being affected; to put it simply I wasn’t feeling safe or well. I have been in receipt of ‘care and treatment’ from mental health services for roughly 8 years, and usually when I got into this state, a process was kicked off. Often this process happened whether I wanted it to or not. I often had no choice in what would happen in terms of my ‘care and treatment’, especially in child and adolescent services. This time the therapist I have been seeing asked me what I wanted her to do. I couldn’t answer her. You’d have thought I’d have jumped at the chance to have a say, but I was unable to make this decision. Having a choice was foreign to me. How was I supposed to know what to do with it? It was like giving a laptop to someone who’s never used any tech before and expecting them to be able to use it without any problem. The decisions over my care have been out of my control for so long, of course being handed the control was going to stump me.


In retrospect, this experience has shown me a lot about how I relate to mental health services and therapy, and also it says a lot about how services are set up to deliver ‘care and treatment’. If we look at the traditional model for healthcare delivery; there is a ‘healer’, the doctor, nurse, therapist, and then there is the ‘patient’, a passive receptor of ‘care’. That is healthcare in its simplest form (I’m aware it is far more complicated in the real world, but this I want to strip this down for the purpose of this discussion). I had literally grown up (as I was technically a child when I first accessed services) with this principle. My way of understanding and relating to mental health services and healthcare professionals was that I just had to passively receive ‘care’. This actually played out in real life, because I didn’t really have any control in my care, I didn’t have any choice. When I attempted to raise my voice to express a choice or opinion, it was often not listened to or actively rebuffed, which only sought to solidify the notion that I was the ‘sick patient’ and the professionals were the ‘healers’ whom would fix me.


I should also add that because I am autistic, I have complex and intricate methods for trying to fit into the social world, including in this healthcare setting. The way that I do this, in very basic terms, is to sense what people are expecting of me, i.e. what character do I need to portray to fit in?, and then filter through that lens the vast and detailed information I have gathered via observing other people’s behaviour, language, body language etc. to create a mask, i.e. how do I portray that character? Being in the healthcare setting where I was expected to be the ‘passive patient’ meant I created for myself a way to fit into that expectation.


So, we have a double-whammy; a system set up in way that solely facilitates the healer – passive patient dynamic, and my own personal ability to force myself to fit into the expected ‘roles’. The trouble being that the longer I fit myself into said ‘role’ the more it becomes habit. Given my situation, complex mental illness plus a neurodevelopmental disorder, I have required a lot of support for a significant amount of time. So, now I really struggle to not take on the ‘passive patient role’ when in healthcare settings. I instead expect to just be put through the same old processes, have little to no choice, and let the healthcare professional have the control.


This has all been in my unconscious mind up until recently, so I don’t do it on purpose. What has brought it to light has been the way in which the most recent therapist I have been seeing works. She does not make the decisions, she lets me. For weeks therapy has left me frustrated and annoyed, and I doubt the therapist’s experience has been different to mine. She throws me a decision and I hedge it as if we were playing dodge ball. Last week, I walked into the session completely dissociated, missing chunks of time, in distress, unable to tell the therapist what was happening because I couldn’t get my brain to coordinate my thoughts and mouth to speak. I fully expected her to take control, make the decisions, and put me in hospital, because that’s what has always happened before. But, as I’ve already outlined, she asked me what I wanted her to do. I didn’t want to go to hospital – that place is literally in my nightmares – I knew that much. But other than that, I was so stuck to my ‘passive patient’ role, I didn’t know what to say or do. I suddenly had control and had to drop the notion of the healer- passive patient dynamic, but that is not so simple after 8 years of being in a position where this dynamic was how it had to be. Eventually, I managed to say I wanted her to phone my nurse, but I don’t think that was even my decision. Now that I know this, I can work with the therapist to unpick it and find a different way of relating to therapy.


The whole thing has been playing on my mind, for my own personal reasons, but also because the implications on how services are designed and how care and treatment is delivered are thought provoking. Are services still set up in a way in which this ‘healer-passive patient dynamic’ can flourish? How can professionals support the people accessing the services to have choice and control over their own care? Is there a benefit to the ‘healer – passive patient dynamic’, or should we seek to get rid of it? How can services change to facilitate different dynamics and ways of working? Is this an attitude thing or a system thing? And so on….


From my own experience, I can certainly say that the way in which mental health services worked with me facilitated this outdated mode of care. Had I been supported to make choices and have control over my own care form day 1 of accessing services, I certainly feel I would at least have felt more accountability for my own recovery, been more able to engage with professionals in a helpful way, been able to express when ‘interventions’ weren’t helping, and simply overall, felt like a human being and not a lump of organic matter with a list of diagnoses.


I’d be interested in hearing the opinions of those who’ve also been in longer term receipt of ‘care and treatment’ from mental health services, especially those who’ve experienced CAMHS. Is my experience similar or different? Have others felt this way? Would choice and control over care and treatment be better or worse?