Patients who are living with a long term condition and who have embarked on the transformational change required to live well with their condition can bring a new perspective on supporting the system that wishes to put patients at the heart of everything they do.
At the age of 24 I developed Rheumatoid Arthritis (RA). In eight months I went from being a fit, active young man to a clinically depressed wheelchair user in constant pain.
My relationship with my condition and myself mirrored the relationship I had with the health service. A relationship where as a patient I felt viewed as a group of symptoms to be diagnosed, treated and fixed in order to be made ‘right’ again. The control and power lay with the people ‘fixing’ me. I was dependent on their expertise. I felt unseen, unimportant and certainly not listened to. I viewed my body as something that had let me down and was now alien to me. My future looked hopeless and bleak.
Around six years after developing RA, a friend of mine came to visit me. He too had a long term condition. He just sat quietly and empathetically listened to me. I did not sense any judgement or the need to give advice. For the first time, I felt truly seen and heard, and as Peter Block has said ‘Healing is being seen not solved’. He then came to visit me on a regular basis and through a process of asking powerful questions he helped me to start to transform the relationship I had with myself and my condition. My self image, confidence and self efficacy quickly improved. I developed a clear sense of purpose and a vision that was built upon a sense of hope and possibility. I clarified the values and principles that would guide the choices and decisions I would make in moving forward.
Over time I began to view things differently. I developed a mindset that was optimistic, appreciative and affirmative, focused as it was on finding solutions and not getting lost in the problems of the past. I worked on becoming more reflective and self aware and I used powerful questions (grounded in a spirit of inquiry, curiosity, open mindedness and acceptance) to challenge my self talk.
My life began to turn around, a transformational change was occurring and it was based on me consciously taking control of my life in order to achieve my vision of living well with my condition and finding fulfilment in my life.
I now recognise that I was leading my own recovery. I was no longer a patient as defined by the health system but a patient in control, leading myself and the choices I was making in pursuit of my purpose and vision – in short I had become a patient leader.
The experiences, principles and practices that guide me in leading my own life as a patient have had a powerful influence on my work with healthcare staff. I believe the insights gained from leading and managing my own transformational change can provide a way of being and operating that supports staff to relate and work differently with patients. This new way can facilitate and support the changes we need to see if patients are truly to be embedded at the centre of our healthcare service.