Chloe Gamlin is GP academic clinical fellow in Bristol. She is on Twitter: @GamlinChloe
I am a doctor, and – reluctantly – I am also a patient.
I really began this journey a decade ago, with a medical school application that focused on the importance of patient stories. I painted a picture of medicine as a profession devoted mainly to listening. In my practice so far I have tried, however naïvely, to be true to the idea that every patient is a sister, a brother, a mother, or a father, an aunt or an uncle, perhaps a key figure in the community, or perhaps a recluse – but regardless, each patient is a person with a story and place in the world outside of their hospital bed.
For me, that once watertight seal between clinician and clinic was ruptured forever by the power of a diagnosis…
However, it wasn’t until I became sick myself that I really understood what it meant to be a patient, or indeed those wider principles I tried to root my own practice in. For me, that once watertight seal between clinician and clinic was ruptured forever by the power of a diagnosis, so; this is my story.
Floored by abdominal pain towards the end of a night shift, I joked to my colleagues that my life was far too boring for it to be appendicitis. I left morning handover with a breezy ‘see you later’, but I never went back to that job. Instead, I found myself navigating the medical world from the other side of the bed.
Like so many of my colleagues, I had subconsciously absorbed the idea that patients got diseases, not doctors. My threshold for seeking urgent care was high; I had a fear of being seen as making a fuss. I attended only when my symptoms became undeniable to even the most stubborn of medical personalities.
Lying in a hospital bed, I asked to be told my observations. What were my blood results? What was the next investigation? Who could I speak to for an update, for a plan? As the results came back, one abnormality after another, I finally allowed myself to relax into the idea that I was actually unwell. Waiting for these snippets of information was strangely disempowering. Usually I would have access to any and all results for my patients, yet when the sickness was happening to me, I had lost that authority completely.
Shared decision making took on a strange, strained form in this environment. In the medical hierarchy, I was years ahead of the clerking doctor, but relied completely on her retelling of my story to a registrar to access the next steps in my care. The clerking doctor was unsure of how much to explain, and how much I knew, and I found myself simultaneously encouraging her and apologising for my position as a doctor – ‘I know this is a nightmare for you’.
I was later given information leaflets about my condition and the various treatment options by the consultant in charge of my care. He offered them to me almost apologetically, saying ‘this is what we give to the patients’. I tried not to laugh – it seemed everyone thought of me as a patient but not a patient, and a doctor but not a doctor.
This ambiguity of the roles extended beyond these doctor, doctor-patient relationships. I found it necessary to try to manage the responses of those around me, as well as myself. It was as though I was trying to use my qualifications to influence the illness itself.
My partner arrived to the hospital, face drawn, and we asked to see the scan images. I remember observing my x-ray and CT with a bizarre level of clinical detachment, noting the dilated bowel with mild interest at odds with the pain. In many ways we shared that load, yet I still felt responsible for presenting the information in a positive light. I was also acting as a translator of sorts to my non-medical family. I was explaining my understanding of the situation in the most palatable way, based on the jargon-filled conversations I was having with the doctors who could have been my colleagues just as easily as my clinicians.
The level of emotion around me was hard to take; I suddenly understood that my place had shifted to a sister, a daughter, a girlfriend. The relatives clamouring for doctor updates were just trying to understand how the person who last week ran a half marathon, could possibly be in such a mess. They could see the problem, they could hear my take on the medicine, but that professional boundary meant allowing the opinions of the well doctors to give context and meaning to what was happening to the sick one. What was their version of my story?
Becoming unwell, with what turned out to be a relatively serious and chronic condition, forced me to reconcile these differences. One thing was clear though: I was not fit for work. In the early stages of my illness, while investigations were ongoing, I was hesitant to speak to my supervisors about needing extended time off to recover. Without a concrete diagnosis, I became aware of my own biases; I had a fear that without a label for my constellation of symptoms, they were somehow less legitimate. My supervisors soon put that thinking right, asking me how I would approach the situation if it were a colleague or a patient. I reflected on the compassion I allowed myself compared to others and was forced to face an uncomfortable truth – I was unwell, whether it had a name or not, and for a time I had no choice but to take on the role of the patient and not of the doctor.
I was hesitant to speak to my supervisors about needing extended time off to recover. Without a concrete diagnosis, I became aware of my own biases…
Receiving a definitive diagnosis was a watershed moment. I suddenly found I had a medical currency; rather than listing the various symptoms I could say a couple of words that resulted in universal understanding from colleagues and friends in the profession. For some patients suffering with medically unexplained symptoms, a diagnosis with defined treatment plans would be a blessing. However, for me it brought a heavy insult to my identity.
There was talk of a ‘new normal’. That’s a phrase I recognise and use in my own work with patients. What I did not recognise though was the level of denial and anger it can create, particularly in the early stages of a significant diagnosis. I didn’t want a disease. I wanted to go back to my athletic body, not my weakened one. I wanted to play sports and see my friends and travel and stay out late and I wanted it now. The distance from where I had been before to where I was at diagnosis was so much further than my last half marathon. I was resolute: accepting that ‘new normal’ was simply not an option.
It turns out, though, that the ancient idea of ‘Physician, heal thyself’, can really only go so far. In my refusal to accept that this was not a temporary situation, I embarked on a regime designed to escape from a ‘new normal’ and instead Sort Things OutTM. Yoga, crafts, and blending all manner of berries were on the menu. Late nights, excess screen time, and anything strenuous was off. Yet in the wise words of my own doctor, it was immunosuppressants I needed, and not Ayurveda.
Although my methods raised some eyebrows, I felt that taking some form of control of my health alongside the prescribed medications was the most powerful part of my recovery from the acute phase of the illness. Despite feeling strongly that I was equipping myself with the tools to manage this longer term – whether that is true remains to be seen – it was the narrative I was constructing around my illness that really mattered to me.
I wanted to be the person known for an interest or a skill or a personality trait, not the person who has a disease. During my initial recovery phase I was designing a system for myself so that I could talk positively about the experience and demonstrate a refusal for it to erode my sense of self. The ultimate aim was to emerge victorious, healthier than ever before. That was the story I wanted to tell – and the story I wanted my doctors to listen to.
This thought process reflected the insult of an illness on my professional identity, but as time went on I realised it was in fact an insult to my patients. Accepting a diagnosis and treatment is something we ask of patients on a daily basis, but how often do we really ask them for their own story around their disease? Constructing and then deconstructing my story of an illness has been an important point for my development as a clinician. I concluded that there is, obviously, no inherent moral value attached to either sickness or health; that the speed or completeness of recovery is not a measure of worth. All patients, as people, have a story, and stories of illness are simply stories of life.
I am a doctor and I am a patient; thank you for allowing me to tell my story.
Featured photo by S O C I A L . C U T on Unsplash
