“All I ever wanted was to come in from the cold”. Joni Mitchell
Patient as refugee
When people suffer from life-changing illness, they are expelled from the life they once knew and uprooted from their ‘home’ – aka their previous body or mind. They are isolated in a new, confusing, ever-shifting world (of daily experiences and healthcare) not of their choosing.
They are in pain, vulnerable, dependent and yearn to belong again. Often they are faced with the fate of all outsiders – loss of identity, stigma, labelling, infantilisation and powerlessness. They are refugees.
My mum was a refugee, a kinder-transport child, who came from Vienna at age nine, speaking no English, arriving at Liverpool Street Station with one brown suitcase.
Many of my ancestors moved across Europe. My grandfather on my dad’s side was from Prague, his father from Frankfurt. My grandparents came to England just before the first world war, and changed their name from Guggenheimer to Gilbert, to avoid anti-German feelings. We are a family of refugees who wanted to belong.
Belonging or seperateness?
When I had mental health problems, all I wanted was to be safe and belong again. The low level generalised anxiety that I still live with means that safety and belonging are the drivers of my life, love and work. My mum, all her life, wanted to be safe and belong. Her experience of war, I often feel, was akin to my six year experience of mental illness hell. We both have wanted to come in from the cold.
Many patients are now connecting with each other and forming a sort of diaspora – a community of interests and common values, based on shared vulnerability and humanity. Whether this be through social media, community development or through ‘patient and public engagement’ activities, this steady growth in communal strength is rooted in the ‘refugee’ experience.
People who suffer from life changing illness are forming new bonds, new ways of sharing and learning from each other, and new collective strengths founded in the crucible of pain.
Ironically, it will be these refugees who save healthcare, by finding new solutions to unmet needs and creating organisational forms that re-link healthcare institutions to their original purpose of public value and service. And, most patients I know who want to change the healthcare world, want to work with health professionals and build trusting relationships. We want to belong.
By the way, the EU Referendum will not be decided on facts or evidence. It will be decided on feelings – whether we believe in belonging or separateness. And I know where I stand on that one – with my mother, both of us with our refugee hearts – knowing that there is only one way to go in this life, in this work, in this decision. I will never vote for seperateness.