Learning Life from Illness

indexI’ve had a bit to do with illness, and in my experience, it is the stories written by people who are sick, or have been gravely ill, including sick doctors, that are often the very best teachers of knowledge of how to care for sick people. They go beyond the medicalisation of illness and human beings, and seek to take us to much deeper places.They talk to our souls and hearts, and through their honesty help us find true compassion. I am sharing some today.

A special friend and colleague Dr Shibley Rahman wrote on 15 June 2014 My experience of being a sick Doctor and it is a courageous and deeply personal account of being a sick doctor himself, and a recovering alcoholic. I met Shibley only last year, and since then have found him to be a loyal friend, as well as someone who is seriously and very personally committed to improving the lives of people with dementia and the disabled. It is a journey that I believe we must all listen to.

Shibley eloquently wrote:

“Anything can happen to anybody at any time.”

This one principle does guide what I think about people and health.

It’s what I think when a friend of mine living with dementia suffers a bereavement. It’s what I think when a friend of mine gets told he has bladder cancer.

It’s also how I come to rationalise my six week coma in 2007 due to acute bacterial meningitis. I was rushed into the intensive care unit of the Royal Free Hospital Hampstead, having been resuscitated successfully by somebody I used to work with in fact. He knows who he is.

His team stopped me fitting in an epileptic seizure. His crash team got a pulse back on their third cycle of jumping down on my chest after I had been flatlining in cardiac asystole. He managed to put a tube down me as I had stopped breathing.

I then spent six weeks in a coma, and my mother and late father came to visit me every day in intensive care, and in the neurorehabilitation unit (Albany Ward) at the National Hospital for Neurology and Neurosurgery, London (a hospital in which I had worked in 2002 in a rotation which included an interest of mine, dementia).

I am now living with physical disability. I can now walk, and I remember my protracted time in a wheelchair. I remember people’s reactions to you in the street. I remember how ‘available’ black cabs would simply drive past. I was, in effect, taught how to work again by inpatient and community physiotherapy.

Due to my meningitis, I could barely speak; the “speechies” helped me with that. I had difficulty planning a cup of tea; the “OTs” helped me with that.

I can relate to all the current NHS concerns how you become stripped of identity in the modern NHS: you become a bed number, or at best a surname.

But in many ways, as my late father kept reminding me shortly before his own death in November 2010, that meningitis in a way saved my life.

I then engaged properly with the NHS as a patient. I used to see my GP regularly.

As a medical student, I had felt as if I was too busy to see my own GP. Big mistake.”

Read more of Shibley’s personal story here…

Lessons from “the other side”: teaching and learning from doctors’ illness narratives tells the stories of doctors who become patients who have been shocked by their experiences from “the other side.” In this story, Jonathon Tomlinson looks at these writings and considers what can be learnt from them.

“For many years, doctors have written about their experiences as patients in the hope that others might learn something from what they have been through. They are motivated by the often shocking realisation that medical education and clinical practice have prepared them so poorly. They are concerned about the treatment they have received and the way they have treated patients in the past. They are keen to explain what it is like to be a patient, the particular problems that doctors have in coping with illness, and the health risks associated with their profession.

This article includes these quotes:

“How we treat patients

Many doctors are driven to describe their experiences as patients because they are concerned about the way they were treated and the way they themselves treated patients before they became patients. Dr Kay McKall, a GP who suffered with bipolar disorder wrote for the British Medical Journal in 2001,

 I’ve become sensitive to mistakes that other doctors make when managing me, and I have translated those mistakes into corrections in how I myself manage people with depression. The point of this article is to share these with you.”

Dr Kate Granger,a young doctor with metastatic sarcoma wrote her book, ‘The Other Side’ to help health professionals,

to be better able to understand exactly what being the patient is really like and how their behaviours, no matter how small can impact massively on the people they look after.’

For a long time, doctors as patients have been concerned by how poorly doctors give bad news. In 1952 Professor Henry Sigerist wrote,

 medical colleagues were incredibly secretive … I was never told results, only general answers, not the facts and figures I wanted to know. The result of this secrecy was that for a number of years I never again consulted a doctor.”

Read the full story here…”

And finally, I am sharing part of my story from Learning-life-from-illness-stories published in 2012, a collection of stories and creative expressions including a whole chapter of poetry expressing life with Multiple Sclerosis, from people living with various forms of critical illness, or living alongside someone with illness, and their [our] response to Havi Carel’s book Illness, a young philosopher’s story of being diagnosed with a terminal illness. In Chapter 7, We live until we die, I wrote:

“There is a thin veil between people with illness being treated with dignity or being treated like morons. This story explores my quest for the meaning of life and desire to make the footprint I leave behind gentle and meaningful, as I am confronted by the lessons of illness and dying. Due to illness my energy levels are low and this narrative will be written in the style of a creative non-fiction account of my experience of illness rather than as an academic article, as I search for what is inside my soul and heart. The grief and loss of chronic and terminal illness is profound, but the beauty and lessons I am learning far outweigh the sadness. Much of my narrative focuses on living with dementia, and I hope to address this in a way that is thoughtful, honest and caring. As I work towards these goals, my soul is preparing for the journey of its life, and my soul mate is crying. Havi Carel‟s book Illness (2008) has given me insight, as well as validating some of my own feelings and reactions to illness.”

Later on in chapter 7, titled Arrogance, illness and death, I wrote:

“The superiority and arrogance of many in the health system remains astounding. Twenty-first century doctors and nurses are there for the diseases and not their patients. They are modern men and women who have taken the science of health too far, and are more interested in being able to diagnose and treat with pharmacology or surgery, rather than being interested in the overall welfare of and outcomes for their patients. Then if there is no treatment they are not interested in you. I am regularly talked down to, or not talked to at all if my husband is there. My intellect and background has not been taken into account, my level of intelligence not considered in the initial neuropsychology testing done for dementia. There has been a gross underestimation of the level of my cognitive impairment, and the disabilities caused by it, because I am still externally functional.

Once a specialist had diagnosed MND, a disease where it was expected I would die a very speedy and untimely death, my general practitioners and other health providers became openly caring [oh, and luckily for me, this was either a misdiagnosis, or miraculously has not progressed, although sadly most of the doctors have gone back to the way they were before]. A palliative health care team moved in, and were truly interested in me as a person, and how they could support me and my family, rather than my just make notes about the disease. They sought not to confirm pain or other symptoms through tests, but to believe respectfully and treat accordingly.

I am still searching for the answer to my question,

why is it not until you are dying that service providers and doctors show their care for the whole person, rather than the disease?”

Like Carel, I have found phenomenology helpful ‘as it privileges the first-person experience, thus challenging the medical world’s objective, third-person account of disease”(2008: 8). She also talks of cynicism (p 49). I choose not to become too cynical, and instead have chosen to speak out as an activist and advocate for those with chronic illness like dementia and for those in aged care,

sitting inside the human cattle yards for aged care and dementia that for many feel like being locked in a prison or a concentration camp.”

We all have so much to learn from each other… and I suspect illness and death teach us the greatest lessons of all.

6 thoughts on “Learning Life from Illness

  1. I found the whole post very moving.

    Thanks Kate.

    Experiencing severe sickness, and the reactions of others to it (including from the medical profession), has been an eye-opener for me personally. It caused me to lose a career-based identity, but allowed me to come into contact with a much more meaningful one for me. Coming to terms with this in the last seven years, as I co-existed with my new life in recovery from alcoholism as well as physical disability, as well as acquiring new skills in international and domestic law and business, though has opened windows when doors were shut tight.

    The reason that I am personally attached to people who have been given a diagnosis of dementia from the medics is that as a human being I believe strongly that anything can happen to anybody at any time. I have also seen the nastiest of events can happen to the nicest of people. And conversely, the nicest of applauses happen to the nastiest of people.

    I strongly support a need for humility from the medical profession. I still feel badly let down by some colleagues in the medical profession who wished to show wilful blindness to my own personal problems. I’ve forgiven them, but I certainly will find it difficult to forget about what happened. However, I am using this energy at last into doing something constructively for the public good. As it happens, I feel that a pure biomedical model for dementia care and support is severely deficient.

    And you, Kate, are very much an ideologically soulmate. You ‘get it’. It’s an honour to know you.

    • Thank you for allowing me to share you story on my blog, and for your wisdom, friendship, and love. It is an honour for me to know you too, and I feel the same about us being soul mates #twinnie

  2. This is so important. Carel’s work describes Epistemic justice as comprising testimonial justice (TJ) plus Hermeneutic Justice (HJ) TJ is the ability of patients to tell their own story, not just the one that doctors (or any others for that matter) want them to tell. HJ is the ability to give their interpretation of their stories. Both are difficult and need time and effort on behalf of the listener. A lot of the time the listener needs to be trained to listen in open minded and therapeutic ways.

    Awareness that there are different stories to be told requires what Dasgupta refers to as narrative humility. “Narrative humility acknowledges that our patients’ stories are not objects that we can comprehend or master, but rather dynamic entities that we can approach and engage with,
    while simultaneously remaining open to the ambiguity and contradiction, and engaging in
    constant self-evaluation and self-critique about issues such as our own role in the story, our
    expectations of the story, our responsibilities to the story, and our identifications with the
    story – how the story attracts or repels us because it reminds us of any number of personal
    stories.”

    Learning about other narratives requires not just deeper engagement with our patients but with ourselves, our peers and academic literature and social media through reflective practice. This takes time and effort and the sophisticated interpretive and ethical skills that comes from engagement with the arts and literature rather than science. It will take pretty radical changes to medical education, clinical supervision and the structure of clinical care, with much greater emphasis on peer support and relational continuity of care.

    But I think it is all possible.

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