Louise tells us about her motivation for getting involved with Disturbing the Body (submit your speculative autobiography about bodies going wrong by 7th May 2020.)
In 2011 I got sick. It was the kind of sick you don’t recover from. The kind of sick no one really understands. It was the kind of sick that, for some, was assumed to be ‘in my head’.
It was not in my head, and over the years I have checked this. I wish it were in my head, that it was something I had imagined and could then identify as ‘not real’ and understand why I might have imagined such a thing.
In 2012 I was diagnosed as having post viral fatigue. Some people around me nodded sagely. As if this meant something else. I now know what that was.
I have spent a career working with people with complex and distressing mental health conditions, many with experience of trauma and many with life times spent in hospitals and under the care of mental health services. Whether physical or mental health condition, ‘all in your head’ does not cut it.
The illness I have had, and continue to live with, has been widely thought to be psychological for many years. Unhelpfully reinforced by a large scale research project conducted in the UK with poor science and even poorer conclusions, the rest of the world is now moving on – research in genetics, biochemistry, immunology and elsewhere are learning new things, and it may be a whole spectrum of illnesses and conditions.
I have spent a career working with doctors and nurses and diagnostic criteria. By the end of almost twenty years I had reached a number of conclusions: when we have been in services and ill for a long time, people do not fit diagnostic criteria without leaking into other ones; those diagnostic criteria often offer very little in the way of understanding or information on how to live with or manage them. One thing I found helped me in my work was to find a way of making sense of things, of looking at the bigger picture and understanding the person and their experience.
I began to write about my experience of illness as a way of facing my fears of being sick and what it meant to me, of the stigma and the debilitating impact it had on my life. Writing, and importantly, sharing my writing, helped me with some of the distress that stigma of weird illnesses has.
We are not good at talking about illness. We are not good at talking about things we don’t understand, without being frightened by them and reacting as we always have done with denial and a refusal to look. I have more recently been diagnosed as hypermobile – a disorder of the connective tissue. It may account for previous difficulties, it might be another thing.
I am so pleased to be a part of this new project with Boudicca Press, where voices of illness, pain, disability and other experiences of our bodies not doing as they’re supposed to, will be embraced and celebrated, and given new frameworks beyond limitations of diagnosis and medicine.
Louise Kenward is an artist and writer with a background in the NHS, working as a psychologist and psychotherapist.