I was admitted to hospital back in the Summer of 2020, the intense claustrophobia of heat from that balmy early evening causing me to collapse onto the cool tarmac outside the hospital carpark. 9 months later and I am still in, although now a further 200 miles away, having recently been transferred to a more specialist hospital in London. After the flurry of chaos and panic, once stabilised, I was asked by the team of doctors admitting me, the same old series of questions, the ‘History of Presenting Complaint’, that we’d ask all our patients upon their arrival to the Emergency Department. They of course knew me, recognising my face beyond the mask that hid my cracked pale skin and sunken, gaunt eyes, though this time I was without my ‘Medical Student’ lanyard or official NHS badge. What followed was not the “So what has brought you in today?” or “When did your symptoms start?” – the questions every doctor had taught us to begin the history-taking conversation with, but rather, there was the “How long have you been fighting on the frontline for? Y’know, before you ended up here as a –“ kind of questions instead. They never said the word. Patient.
The response I gave them was that I hadn’t been on the frontline since my entire medical school cohort was sent home on the very morning the country went into lockdown, back in March 2020. But the real truth lay on the fact that, throughout this time, I hadn’t stopped fighting. Every day, every hour, I had been fighting on the frontline of something completely different and something far more personal than any colleague ever needed to know or care about. I had been fighting on the frontline of my own hidden chronic illness, something that was only ever-worsening, away from the blind eyes of my fellow workforce, until it had become all too much. Beyond the designated job role, beyond the only thing they knew me for, I was taking this so-called ‘frontline fight’ far away from the hospital and into the closed realms of my own personal life, no longer running the corridors between hospital wards, now barely being able to get up just a few stairs of my own home on all fours.
Being a 4th year Medical Student with multiple health conditions, physical and sensory disabilities, and a recently-diagnosed rare disease, I am far too familiar with the ins and outs of ‘patient life’. But, as that same Medical Student, I hardly ever get the chance to dig down to the real hard facts, the realities, of my conditions, with my own doctors. What could and should establish my real issues are quickly diverted to the more comfortable conversation-starter of, “What year of Medical School are you in?”, “What do you hope to specialise in once you qualify?” “When do you think you’ll return to studies?” and so on. Whilst on one hand I enjoy this familiar connection, this sense of family welcome, it annoys me that never am I asked the more human questions – the ones that you’d ask any other patient, in order to open up the more vulnerable conversation without the fear of being labelled an ‘incompetent carer’, someone too sick to be looking after others. As a result of who I am and what I do, I have never had a doctor who has holistically addressed my coping mechanisms, the internal emotional battles I have with my poor health, the question as to how I really manage with being both a patient and soon-to-be doctor. Why? Because we are reminded once again that as healthcare professionals, we are not as human as other patients. We are reminded that, because of our career path, we are expected to be less of a patient, and more of a professional, regardless of which side of the hospital bed we find ourselves on. In my lifetime of being a long-term patient, often experiencing and encountering some of the most horrific and traumatic aspects of ill health and medicine, I have learnt that, if you’re a doctor, (or training to be one), you are automatically expected to cope with pain better, understand and process the complexities of our own procedures better, and that on the ward-round we should require less of the patient-doctor relationship and more of the doctor-doctor sort of communication we are used to, when we are those ‘fit and healthy’ individuals working solidly to save the lives of others, not yourself. Thus, it goes without saying that, if you’re a doctor-patient, you require less time, less attention, less love, and less explanation on even your own illnesses. I should point out at this point then, that this is entirely incorrect, and on so many different levels, yet it has only taken me until recently to truly realise this…
Going back to what sparked off the start of my medical career, the inspiration behind me wanting to become a doctor, it was a very tiny concept, (that we all very much have in common), that drove me to be who and where I am today. That tiny concept concerns quite simply the basics of human conversation, empathy, kindness and the ups and downs of lived experience most of us will have both the joy and misfortune of experiencing at some point in our lives. As a sixteen-year old, and international athlete competing on the GB Swimming Team towards the London 2012 Paralympics, my life was changed forever when multiple stomach surgeries left me bedbound in hospital for one year. I am far too familiar with the lengthy hospital stay now. It was during this time though, when most of my doctors were subconsciously setting a bad example on how to be a doctor, as they stood avoiding all eye contact at the foot of the bed on each ward round, that I saw the light and a rare quality in one single junior doctor, who joined in on my care a little way through my year-long admission. After months of not knowing what was happening to me, why I was needing so many invasive surgeries, what was going on far beyond the tests and diagnoses, this junior doctor came back to my bedside, alone, and placed a hand on my spindled shoulder:
“I know how you feel”, she said. Behind a closed curtain, my doctor lifted her blouse to reveal a long scar across her ribs, confiding to me in very few words that she indeed knew what it was like to be a young person stuck in hospital for a long period of time, undergoing scary interventions and mighty lifestyle changes. This junior doctor not only went on to explain what was happening at each stage of my admission, but on the far longer-term, she had also taught me that, from that very day, I had become equipped with a very rare quality not many other doctors or healthcare professionals possess; empathy. All thanks to my lived experiences of being a patient on the other side of the hospital bed.
Years later, on a ward round during a placement in third year of Medical School, I was that Medical Student, trailing behind at the very back of a large group of doctors. Like it had been those nine years before, the doctors avoided all eye contact with the distressed patient lying before us, as they stood mumbling through the medical notes at the foot of the bed. They swiftly moved on, leaving this patient with no better understanding of what her condition was or what was happening to her. In the classic scenario of yet further discrimination, something I often experience as a disabled Medical Student trying to break through the taboo of being that slightly different-looking person in the medical profession, I was insulted by the lead consultant when I had asked him to speak a little louder due to me wearing hearing-aids. As he left yet another patient’s bedside, that patient still lying there with no better understanding of what was happening to them, this doctor muttered to his colleague:
“And how do you expect an invalid like her to run the NHS?” Of course, I could’ve followed this consultant to tell him that I had heard the insult and to question why he truly thought this. But, my main concerns lay on the distressed patient we had left earlier, lying in bed alone and bewildered, not knowing anything about her care or treatment plan. In this patient, I saw a sixteen-year old me, before that junior doctor came along and changed my life. I introduced myself, sat myself down in the chair next to her bed and placed a hand upon her shoulder.
‘I know how you feel”, I said. As an ex-patient of the Intensive Care Unit, I could completely empathise with the fear this patient was so obviously presenting with, as she had been transferred to the general ward just a day before. Just by sharing my own experiences and traumas of ICU, albeit in brief, the patient felt reassured that things would get better in time, knowing now what to expect. What had helped me cheer this patient up here was not the knowledge I had gained from any medical textbook, or the hack of certain conversation-starters other doctors had taught us on the ward rounds, but simply my own experiences of being a patient-doctor, doctor-patient. With wide eyes she then told me:
“I didn’t realise you doctors were all so human”. That was an interesting, yet hard pill to swallow, no pun intended…
Now, these many ten years since my longest hospital stay, and not much has changed in terms of what I have, and continue to, experience on the ward as a patient. Although now just 1 year away from qualifying as a Doctor, I often lie here, bedbound, in complete disbelief at the taboo and lack of care there still is towards doctors also being human, and hence with the ability to get sick and be patients. Just a week post-Covid, arguably one of the worst few weeks of my entire inpatient stay so far, I developed horrific neck pain on top of my already pre-existing EDS (Ehlers Danlos Syndrome) pain and ‘Covid bone pain’. Time and time again, I flagged it up with the doctors and nurses:
“My neck – it is really red and raised. It’s getting worse and all the more painful”. But the response?
“Stop moaning Alex. Your neck is not fractured. There is nothing wrong with it, so move it! You should know as a Medical Student that the less you move your body the stiffer you’ll only get”. Might I also add that I was told, because I am a Medical Student, that I should be coping far better with this awful pain and that, because I was nearly a qualified Doctor, I shouldn’t be crying in pain, or displaying any forms of suffering, for that matter – all in all, I should know so much better”. When the pain became so excruciating, along with burning lungs and locked shoulders too, I was howling. I protested, through sorry tears, that I needed to see the Doctor and that something wasn’t right. That Doctor – my colleague, but also right then, the person who should’ve been looking after me, tutted at me from the foot of the bed, hands on hips and blatantly shrugging.
“How do you think you can be a Doctor if you cry like this?” I was being given every possible reference to a sulking child, unnecessary and uncalled for. I may be a doctor-in-training, but my choice of career and being in the medical profession, has no effect or influence on how my body responds to pain stimulus or destructive internal illness.
Just days later, with a raging fever of 40, they found a cluster of infected blood clots at that very site in my neck – the very site that, days before, I had pointed out to be red, raised and increasingly, unbearably painful. It quickly led to an awful bout of sepsis, a few weeks of being incredibly unwell and confused, and a further six weeks of aggressive antibiotic therapy needed. Still now, I am on long-term blood-thinning injections to ensure I don’t develop any further clots. Don’t ever tell me again that we as patients are not the experts…
I want you to know that, as Medical Students, Doctors, Radiographers, Physiotherapists, Nurses, Paramedics – whoever, we are without doubt experts in treating other people when their lives are turned upside down by illness or injury. And we are expected to be experts in this sense, too. We spend much of our lives learning and training to deal with both the commonest and rarest of diseases in people we’ve otherwise never met before. But we do it because we are passionate about helping others and making a positive difference to those whose lives are affected by ill health. Yet, when we are the ones who become struck down by that same sort of illness or injury, we rarely do know the answers to our own conditions or on what’s going on inside our own bodies. Nor should we be expected to, either. Because, like anyone else, we have just as much the right to be able to go to someone else, to be looked after by another, to be able to hand over the responsibility to another when we ourselves are at our most vulnerable. Because we, like everyone left and right to us, patient, Doctor, whoever, are just as much human.
Now in my ninth month of being bedbound in hospital, and in the second hospital to be spending it in, under the far better hands of a wonderful array of specialist teams here in London, I am to expect many more lifestyle changes in the near future, thanks to my ongoing, and progressive, chronic illnesses. Although it is still very much my optimistic hope (and hopefully a realistic goal too!) to return to Medical School in September 2021 to complete my degree and qualify, I will be equipped with many more things than just the added empathy and additional ‘lived experiences’. I now have a double-lumen Hickman Line inserted into the vessels of my heart, where I am now dependent on receiving my main form of nutrition, intravenously, via a bag that I will have to hook up to at night, and carry around in a discreet backpack during the day. In the next few weeks, I will also be undergoing surgery to place a large tube into my stomach, which will be attached to a drainage bag. This will hopefully significantly reduce the daily nausea and vomiting that I’ve had to fight against in the background, every hour of every day, for the past few years, and although naturally terrified, I am excited to have that bit of quality of life somewhat returned. With a failing bladder also, I have had to accept that I will now be living with a long-term catheter, just another artificial tube and bag to get used to, but when is this an option when the only two choices I have are to either pee or not pee? The addition of a rare disease diagnosis and the need for my first ever wheelchair to call ‘my own’ also means that getting around will be a little different to before. Although I can only hope that I can reserve that same level of mobility that will have me running up and down the hospital corridors like before, rather than merely climbing a few stairs on my hands and knees, I never imagined that life would end up being this different, back then on the day I finally collapsed outside that hospital carpark. But when did any of us know? Patients, relatives, medics? Whilst we become so used to breaking this kind of news to our patients on a daily basis, how is that any different to when we, the Doctors, have that news broken to us? We don’t allow it to change our patients, so we shouldn’t let it change us or what we have to give either. But, we do. Because we are Doctors, and being a Doctor is the only thing anyone ever knows us as being.
The next time someone asks me if I truly believe I can continue doing my Medicine training now that I’ve undergone so much shift in my own health, I only have to remind myself that I’ve already come so far training as the UK’s first deafblind person training to be a Doctor. Even one of my own doctors recently asked me this, wondering how I could possibly go around the wards with feeding tubes and drainage bags hanging out from all ends from beneath my scrubs. I just shrugged and asked, “What about the FY1 with a stoma bag, the world-class professor and lecturer with dyslexia, my great friend and GP who also happens to use a wheelchair, the thousands of doctors who go about their daily work caring for others whilst battling their own mental health, anxieties and depression…” Just because we are Doctors, doesn’t mean we are any less human or any less a patient in times of our own illness. As humans, we all have our vulnterabilities, all exposed to the burden of disease, yet these can often work in our favour, rather than detriment us, when it provides a gift of empathy, connection, and common ground, with the ones we are caring for. And whilst not all patients look like patients, and not all illnesses and disabilities look visible, I can guarantee you now that every one of your healthcare providers, every one of your ‘heroes in capes’ have also been a patient sometime in their life, just as much affected and vulnerable to the suffering every other human experiences, whether or not they work in the medical profession. And we must forever remember that, the next time we see our Doctor, our Nurse, our Physiotherapist, the Medical Student taking note of your medical history at the bedside, before judging them for being (or not being) that stereotypical hero, superhuman, robot, expertly invincible to everything the rest of us may feel.
In all of this, I have also got to remind myself, for personal reflection, that, despite all the setbacks, and despite all my interruptions to study and to life, the experiences I have gained along the way, (all the scars, the heartache, the traumas and tantrums, surgeries and complications, emotional turmoils and physical debilitations), whilst being that patient on the other side of the bed, will without doubt make me a far better Doctor to my future patients, now possessing even more of the rarest qualities many healthcare professionals surprisingly lack – that empathy (and perhaps more fortunately for them, the lived experiences too). Knowing that the healthcare field needs so much more of this lived experience and empathy though, for the sake of the very people we treat, our patients, not only takes away the shame, guilt and taboo of being sick whilst treating the sick, but it is also more than enough to make me want to scream from the rooftops of all hospitals, thanks to my own alternating journey between being medic and patient, that ‘Doctors really can be Patients, too‘, and is something that, being both, I am personally very thankful and proud of…