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Sixteen years ago I started my journey through the academic and clinical world of psychology. Little did I know it but I was on a journey of a lot of fun, learning, adventure, love, personal and professional development and subsequently pain, suffering and a journey of development that I could never of even tried to comprehend.

 It is this journey that transported me from being a curious, empathic, educated, competent, albeit naïve human being and health professional, to someone with deep insight into what it is really like to feel the disempowerment, frustration and suffering of a chronic illness.

When I think back to my first experiences as an assistant psychologist, particular memories come to mind. For a year and a half I worked in a neuropsychology department, and had the pleasure of working with a lot of really amazing people diagnosed with neurological disorders, or categorised as having ‘unexplained medical diagnoses’. The doctors I worked with for the most part really did have the best of intentions at the bottom of their hearts. We were working within a system with limited resources, restrictions and also within the realms of western science. In as much as doctors and patients would obviously like to think western medicine has most of the answers, there is so much about the human body that we do not yet understand. In my humble opinion, Western medicine looks at parts of the body separately rather than having a more holistic approach, which would perhaps enable a more comprehensive understanding of the complex functions and interactions within this unbelievable organism.

As clinical psychologists/neuropsychologists our role was to provide a comprehensive assessment of a person’s cognitive functioning and emotional well-being, and work with the rest of the neurology team to help provide the best care possible to each individual patient. Best care – it means so much when you’re a clinician, often working with limited resources, time, and in a world of medicine which still has much to learn. there are so many people you would love nothing more than to be able to significantly improve their lives, both psychologically and physically, but for various reasons it is not yet possible. As a patient best care has taken on a whole new meaning for me; the limitations of the medical world leave me frustrated and angry, disappointed and sometimes quite frankly mad. Although I know that most of the health professionals I see are doing their best, I see how frustrating it is to: wait on extremely long waiting lists; see a doctor you feel doesn’t really listen; get so many different opinions from so many different professionals; feel at times you understand your condition more than they do; and frequently leave appointments feeling more frustrated than you were before you arrived.

I feel I now have an opportunity to see things from both perspectives; the well-meaning yet at times frustrated doctor, to the often disappointed, saddened patient who tries to stay hopeful among much adversity. When doctors are: under so many time pressures; do not have all the answers; things are not black and white; do not know how to help or can’t help, their own feelings of being disempowered can get projected onto us. We as patients understandably want answers, treatments that work, doctors who are empathic and truly listen, and a medical science which is more holistic and developed.

It is also important to acknowledge that Western medicine has over the year’s undergone immense transformation with Incredible life-saving and life improving treatments increasingly available for a wide range of medical problems, and with doctors demonstrating unbelievable skill, knowledge and technique. I imagine all of us both patients and doctors, have had either their own lives, or the lives of their loved ones, saved or significantly improved, on numerous occasions throughout their lifespan by the incredible advancements in the medical world.

It appears that as conditions become less clear, more uncertain, with less favourable prognoses, and chronic in nature, both patients and doctors can end up in a disempowered position, trapped within the medical system they wholly rely on, attempting a complex dialogue, entrenched in considerable emotion, whilst trying to work together to achieve the best outcome possible. Perhaps it is only by truly acknowledging our shared humanity, fraught with limitations in addition to numerous strengths, that we can begin to move forward, working more collaboratively and openly; Enabling us to transcend together from a journey of naiveté to frustration, to one from naiveté to collective empowerment, even alongside the profound adversity and uncertainties inherent in life.

When a client and I find ourselves ‘stuck’ during psychological therapy, I could do one of two things: I could go off and try and find a solution by myself; or I could bring it to my client, acknowledge that we are Both struggling somewhat to find a way forward, reflect upon this and try to find a solution together (Whilst I also engage in clinical reflection, individually and within supervision). Fortunately, the heart and soul of any psychological therapy, regardless of what treatment(s) are being implemented, is the therapeutic relationship, which means collaboration, openness and honesty is central to everything I do. I have often wished a doctor would just say to me, ‘I really don’t know how to move forward here, why don’t we have a good think together about where we might go from here’. And of course also listen to and take on-board my response.

In my opinion an acknowledgement by doctors of their understandable human limitations, in addition to those of the organisation one works for, and the medical world as a whole, would go a long way to helping patients and doctors to become joined in their shared goals, rather than separated by their shared frustrations

7 thoughts on “My journey from naivety, to frustration, confusion and disempowerment

    1. Hi Tim, thank you so much for your comment it really means so much to me as I feel that cannot only writing these blogs for myself, but to provide another voice for each and every one of us who are experiencing a chronic illness.

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  1. Wonderful post – you make some excellent points that echo what many patients with difficult to diagnose and almost impossible to treat chronic illnesses like FMS (Fibromyalgia), ME (Chronic fatigue), or EDS (Ehlers-Danlos Syndrome”) feel.

    Perhaps doctors would be surprised that we “difficult” patients would love to hear those words: “I don’t know”. It would be such a relief and, with both parties on the same side in their not-knowing, it could be the beginning of collaboration.

    I’ve lost faith in any doctor that exhibits too much curative confidence. Medicine is fraught with too many unknowns to justify such confidence and the hubris of believing otherwise poses a danger to the patient.

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  2. Thank you so much for your lovely comment. The word ‘I don’t know’ would be so refreshing to hear from a Dr, rather than being subjected to the frustrations and helplessness that they might be experiencing professionally, feeling able to acknowledge, exactly what you said ‘that medicine is full of unknowns and uncertainties’. Many of the answers do not yet exist, and I feel doctors for many complex reasons are often too quick to feeling that they have to jump into ‘one camp or the other’, with regard to their opinion about different disorders, rather than being able to stay in a place of not knowing and on-going learning. One of my favourite books is called ‘learning from the patient’ by Patrick Casement. This book provides an amazing reflective place, whereby as a clinician you can begin to truly acknowledge that although much learning has to come from academia, and clinical training, that if we are truly open to it, the place that we can learn the most is actually through our patients.

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