Saturday, 26 October 2013

Extreme contrasts: a life in two halves

I have recently commented on Twitter a few times that I felt like I was leading two very different lives, as a patient and as a professional...

Talking to others patients who are working in this area, I don't think I am alone with this feeling. Anyone (in whatever line of work) will feel separation and connection between their personal and prefoessional life, but I think the separation and connection are both more extreme and somehow simultaneous when working in this area.

These two lives feel a million miles apart, but I know they are linked. I am passionate about my work because of my personal experience as a patient. And each day I spend as a patient, that passion grows. The lessons I have learnt as a patient (both in learning about myself and the wider world) help me professionally. The great life lessons I have learnt through my illness and becoming an active self-manager are invaluable in every aspect of my life really. I have even begun include the fact I am a patient on my professional CV - something I never thought I would! Being a patient means to have to develop skills like problem solving, managing change and liaising with lots of different (healthcare professional) people. I think all the talk of skills in the great #patientleaders chats each week lhas started to rub off on me... These are valuable skills, whether learnt through personal experience or professional training. 
Each time I trudge through a late night out of hours system or battle with the administration maze, and everytime I sit in a waiting room for hours I am picking up (however informally) great insights into what works and what needs to be improved. But sometimes the contrast between the exciting conversations I have and the reality as a patient can be hard to digest and emotionally draining. As I said in my reflections from Future of Health, exciting conversations give me hope for my personal day to day live with my illnesses. But there is always an aftermath to hope - of coming back to reality (often with a crash landing).

How have I changed as a patient? My professional work has given me more confidence and a better understanding of how the NHS works, which has certainly helped me as a patient. I have been able to find a plethora of helpful resources and information, and on the rare occasions when I actually get to see a health care professional, I can have a better dialogue with them. 

But I am still hitting brick walls nonetheless. The other day for example, I had felt really empowered during the day and enthused about self-management on some training with the Self Management Partnership... Only to come home a call from the hospital clinic saying that having had tests in August (2013) that suggested a new drug might work, I have to wait till October 2014 to have an appointment with my consultant to see if I can actually go on the new drug. The discharge letter from the tests was so ambivilous that there was nothing my GP could do to follow it up. Yes, you read that correctly, October 2014. I naively assumed it was 2013 and just a typo but the conversation with the secretary confirmed my worst fears. There was nothing I could. The system was broke, and it was breaking me. I was heart-broken for our broken system. 

The contrast of these two feelings in one day is a lot to manage. Rollercoaster doesn't come close, it's more like being dropped from the International Space Station into orbit and landing on earth. In the space of four minutes. 

The Mental Health Foundation quoted in a report in 2003 that "it is argued that user involvement can be therapeutic in itself by virtue of enhancing confidence and self-esteem." It certainly can be, and it has given me meaning to my life that I had missed so much since my diagnosis. But sometimes there is a great personal emotional cost to indulging myself in the exciting work, when I know that, soon, somewhere around the corner, I have to return to the Land of the Ill and get lost and broken again in The Maze of the NHS system. I cherish those moments in the Land of Hope, powered by people, and dread the short sharp rude awakening back to my personal reality. 

Although sitting in really exciting conversations is very different to being subjected to horrible tests at the hospital, these two worlds are really the same world - my world. I need to learn to embrace all the latitudes and longitudes that make it complete. 

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