Seated a few metres apart, the Doctor hunched over, head in his hands, before letting out another long and heavy sigh. Again, there was silence…
“How did you even get here?” he asked me, in some surprising sort of dismay. I sat there in silence, pondering over what to say. I could’ve told him that I was driven there, or that I’d dragged myself into a taxi after having collapsed out on the roadside. The last time it happened I was right outside the Emergency Department. Upon opening the car door, I tumbled out onto the hot tarmac, before fitting and vomiting everywhere inside my face mask. I was just two metres from the hospital’s front door, yet I still hadn’t got there quickly enough. I had been sent home just a few days before.
But I knew that was not what the Doctor meant. I knew that none of this was simply just ‘black or white‘. Years upon years of flashbacks; graphics, data, unanswered phone calls, rejection letters, fruitless appointments, upturned noses and wasted time, flew through my mind. I paused some more.
“I really don’t know”, I eventually said. But we both knew the answer was so obvious, there in black and white, hovering between us like the ‘elephant in the room’. Where did it all go wrong? Minds had become narrow, visions become short-sighted, listening ears deaf to my story. The conversations that needed to be spoken, were never spoken, the dots that still needed to be joined were only left to scatter even further apart. And through all this time, I was made to believe that there truly were no answers, no cause to even question in the first place, that I began doubting my own experiences in my own body, where guilt and shame were the only things I ever felt when I knew I needed the help and the solutions. The simple thing was, that nobody had ever listened, nor believed me before…
“Come on! For God’s sake, get UP!” the nurse bellowed close into my ear. I had collapsed into a heap on the cold, hospital floor, falling unconscious and suffering a seizure. My skull felt like it had a huge, weighted water-balloon that was sloshing about inside my brain like a boomerang. My eyes felt like they were going to burst out of their sockets, arms and legs completely numb to any sensation, other than to an unbearably sharp, cramping pain from where I had been seizing a few moments before. My heartbeat was thumping through the side of my neck like a herd of galloping horses, so out of sync that you could count the pulsations just by watching the nodding movement of my nose. I felt hideous.
“Come on! Get up!” the nurse shouted at me again. “You can walk! There’s nothing wrong with your legs!” But somehow, I couldn’t connect what the nurse was saying to what I was being told to do, unable to process anything other than accepting that dreaded feeling of sinking into the floor, as my surroundings gradually became clearer again. I remained weighted down, unable to even lift my heavy head, legs still jittery and numb.
“Stop wasting my time, Alexandra!” My forehead touched the tip of the nurse’s shoe, who was now stood towering above me, hands on hips, tutting. It smelt like old rubber worn by aged mop-water sick. Before I could make another attempt at summoning some non-existent energy to move from the cold, hard floor, I felt two claws, as hands, heave underneath each armpit like daggers. The nurse thrust me up, yanking me off the floor; I was hanging just by the whim of my hollow, spindly armpits.
“Oww” I groaned quietly. My pain was unbearable, but the sickness was worse, the sheer tachycardia sending me into ripples of sweats and goose-bumps simultaneously. I was dragged across the ward corridor by this nurse and two disgruntled healthcare assistants, before being flung into the char beside my bed. The room swam in shades of custard-yellows and sky-blues. I tried to make out the quivering outline of another hospital bed opposite me. I retched.
“Please –“, I begged softly. “Can I go back to bed?” Upon falling, my hip had dislocated and was now dangling out at a nauseating 90 degrees, but the nurse wasn’t having any of it.
“No, you may not! It’s breakfast time now. If you don’t eat, you’ll keep ending up on the floor, and quite frankly, I don’t have the time or care for the extra paperwork. No wonder you’re so skinny”. At that point, I wanted to scream internally, but the tears in my throat were too painful to swallow, like lodged stones silencing my voice. I knew there was no point – I had seen and heard this all before. They wouldn’t have believed me anyway…
That was 2017. Age 23, I went through another long eight weeks of my life confined to a hospital bed, all hope at loose end. Following another stint in the Intensive Care Unit, I had been moved to a Frailty Ward, given it was the only available bed in the entirety of the hospital, where, for those next 2 months, I remained under the care of a Geriatrics Team, and surrounded by neighbouring patients, all of whom were at least 60 years senior to me.
For those eight weeks, I witnessed more patients slip away right beside me than I’ve ever seen in all my admissions collectively – lying next to a stale blue curtain that was closed around a still body was an uncomfortable thought and presence. I knew I was in the wrong place. I was unimaginably weak, temporarily paralysed, and couldn’t keep even the smallest of sips down without vomiting, yet still, nobody knew what was going on, or why. Nobody even thought to investigate it much further either. Each morning, the doctors came round to the bedside, barely taking one look at my desperate face, before finally making brief eye contact and clearing their throats.
“BMI is fine. All reflexes intact. Are you sure you don’t want to see the Psychiatrist?” I nodded. I was weak, physically, but I wasn’t so weak-minded to fall for their short-sightedness. They were barking up the wrong tree, that I knew, for certain.
After propping me upright in the chair, the nurse stomped away and I was left uncomfortably slumped, with both my call bell and phone too far from reach. Just half an hour later, they would test my blood sugars to find they were 3.2. I was hypoglycaemic and this nurse didn’t even think to check earlier. Why? Because she continued to believe, as did the doctors, that all of this was fake – that I, was faking it. All of this, years of progressively worsening, debilitating symptoms, and being at my very lowest and in need of help, was made up and ‘in my head’.
I can’t honestly remember the last time I had a few hours completely free of pain, or a day completely free of vomiting whatever I tried to consume by mouth. I can’t remember the last time I woke up from the longest sleep feeling completely refreshed, instead now being burdened with even more exhaustion than I had before I went to bed. But I can remember the last time I tried to explain myself, so desperate for someone just to listen, to join the dots, to take my very word for it when I knew my own body best. Because that, I am reminded of, every single day. And I know I am not the only one to feel this either.
On a day to day, when behind the stone-smile of a make-upped face I run on autopilot, my role as the UK’s first deafblind medical student training to be a Doctor utterly fulfils me, taking all these ambiguities away for those hours of a shift, because it is during this time that I have the opportunity and privilege of advocating for other patients – being the voice of those who can’t speak or won’t speak, or who are silenced by the very people who are supposed to be their listening ears. It is my passion and my calling, because I have been there.
The year-long hospital admission following numerous abdominal surgeries was hard. I was a teenager then, and one whom had to very quickly learn that life was now wasting away before me, that I would have to grow up fast if I were to brace myself for whatever was coming next. I lost friends whilst in that bed. For a long time too, I lost my own identity in that bed. I lost all vision, metaphorically speaking, I lost hope and courage, the ability to sit and stand, walk and smile. I received exam results from that bed, conflicting pictures of an unclear future. I lost trust for the healthcare profession in that bed. But, it was also in that bed that I found the spark, the need, and the determination to take up my now-career in Medicine, to become that Doctor and advocate I never had myself, when I needed it so much. Even then, through all the uncertainty and trauma, my parents were constantly pulled aside and told my symptoms were not real, that the post-surgical pain was not justified, nor was the fact that my body was somehow failing in every possible way. They tried to convince us, sucked into this bullying blackmail that thankfully, I remained mostly shielded from in that year, mostly due to the concoction of medications I was put on. It wasn’t until a few years later that we heard in the news that all three surgeons that had operated there and then, the ones who had told me my symptoms were not real, had been taken off the medical register – they had been found guilty of malpractice, experimenting on patients during surgery, causing fatalities in some and irreversibly life-changing illness to many others. It was all part of their ‘cover-up’. Still, it didn’t change the fact that I had gone from being an internationally-competing athlete on the GB Teams of 2 different sports over those many years, to being just a young mind in an aged body, crippled and drained by the smallest consumptions of energy, having to decide either-or when it came to doing so many things in one day. I became reliant on tube-feeding, electrolyte infusions, blood transfusions and top-ups. I became reliant on a smile that masked the suffering, yet I still clung onto hope that there were answers waiting out there for me, that there would be people who would listen, without judgment or already making up my story before getting to know my journey.
Restarting my education after rehabilitation, the knockbacks took full-force whilst I tried to stay afloat. I taught myself my A levels and went against the ‘advice’ of an ableist system that insisted I was not capable of achieving anything, by doing the exact opposite to what I was told to do – applying to Medical School. In between all this, I saw the cracks in my future profession growing wider and deeper as I continued receiving ignorant treatment from my own Doctors, and soon-to-be colleagues.
“Try not to touch it”, and “Maybe don’t think about it”, is all they would say when my feeding tube site became grossly infected. I was dismissed that morning, only to end up hospitalised that same afternoon, infection markers sky-high but voice still shut out low.
When malabsorption took over my life, due to intestinal failure and gastroparesis, fatigue became my very worst enemy. Time and time again, I would visit my GP in hope that they’d help me establish the reasons, hence find a solution, but I was only ever asked on each consultation:
“Are you depressed?” “Are you low in mood?” “Just get a good night’s sleep”. It appeared that everything I said, everything I tried to address, was put down to being all in the mind, something I hear far too much of from other fellow female patients. Like many, I eventually stopped going to the Doctor altogether, and straddled through an upstream roar, underwater and drowning, until one day I received a phone call from a consultant in London, urging me to take the four-hour train journey from school in the Midlands to the hospital, because my electrolyte levels were the lowest he’d seen in his entire career. That evening I ended up back in the Intensive Care Unit, frightened and confused by what I had done wrong, or what I had not done right. I can barely remember the journey down there.
As a medical student training to be a Doctor, sexism in Medicine has become an all too familiar topic – one that we continue trying to integrate into course material, lecture topics, whole conference subjects, and awareness days, all in attempt to ‘close the gap’ in the workplace. But what we’re not talking about when it comes to sexism in Medicine, is how this affects our patients, female patients, and how delivery of care and treatment inequalities leads to a breakdown in trust and an inability to access the right healthcare, simply because you’re a woman. The uncomfortable term used for this, is ‘medical gaslighting’, and I have been both the receiver of this negative attitude, and the observer of others whom too have been gaslighted.
It was when I was finally diagnosed with a rare disease In November 2020, 10.5 years after my first bout of isolated symptoms; Ehlers Danlos Syndrome, and its multiple associated co-morbidities (gastroparesis, intestinal failure, PoTS, MCAS, bladder dysfunction), that I then realised how let down people of my condition, age-group and gender, were by the medical profession. It is no wonder that the dazzling symbol of Ehlers Danlos is the zebra, where we are told not to always assume or expect the obvious when you hear hoofbeats from behind. It also woke me up to how little we know, and how little we are taught, about the more uncommon presentations that don’t appear in the ‘textbook’ or compulsory modules throughout medical training. We instead fall into the unhealthy habit of judging our patients just as we judge different demographics of people out in society. Endometriosis, gastrointestinal conditions, weight loss and weight gain, fatigue, perception of pain, and so on, are all examples of very real conditions perceived instead as being hormonally triggered, a part of ‘normal periods’, exaggerated by emotion, or dramatized because we are female, and often compared to the circumstances of childbirth, or dismissed as being lazy or attention-seeking.
During my latest (and current) hospital admission, of 10 months (and counting), in which I received my eventual diagnosis, I contracted sepsis from an infected blood clot in the neck, of which I had tried to point out to staff multiple times before. I was wailing in pain, the agony such a sheer shrill that I had to bite into my pillow to silence myself at times, my neck and shoulders too stiff to move. Yet, the first thing the ward doctor asked me, was:
“Are you on your period?” as though my pain was supposedly emotionally-triggered as opposed to being anything directly physiological. Each and every time this was handed over, the nursing staff would say to me,
“Come on Alex, you can move – your neck is not fractured”, before a fever of >40 confirmed the underlying culprit.
Before my eventual transfer to another hospital, 8.5 months in, I spent the first 3 months of my admission being told every morning by one consultant that I
“wanted to be in hospital”, that I “made myself come in”. Nobody believed in anything I had tried to tell them each day for those many months, having already become lost in a backlogged system over the course of the first lockdown. Even after my EDS diagnosis, somewhat a revelation and relief that what I was experiencing finally had a name, a label, they refused to believe in it, or that they did not even know of the term or condition in the first place. Each Friday, this said consultant would stop all my pain and anti-sickness medication, leaving me to spend long, ugly weekends writhing in discomfort, and retching from nausea. At one point, after nursing staff had recorded for weeks, by each hour, the multiple buckets of vomit I had filled daily, the doctor asked if I had “actually ever vomited?” and whether “anyone has actually seen you vomit?” Again, I wanted to scream internally, but the stones from my smile plopped back down my throat, voice stunned and pleads unheard. Eventually, they suggested I “just go home and continue how you are”, advising that if I was unable to keep foods or fluids down that I should just “stop eating and drinking altogether”. This, may I add, was before any nutritional support or intervention was implemented. They failed to see how I had fallen from the shell of a person I used to be, instead repeating time and time again,
“Your BMI is fine. You are fine”. It was, in their eyes, only about the numbers, not the patient or the person.
During my recovery post acute-phase of Covid in January 2021, still in hospital by this point, the underlying joint pain from EDS was only inflamed further by the effects of the virus itself. Bedbound for so many months before, I was unable to move from side to side in bed, yet regular turning to prevent my joint from stiffening, locking, and then ultimately dislocating. I had pressed my call bell to ask for the nurse’s assistance to reposition me, only for her to stand mindlessly at my bed:
“I have other call bells to answer”. Expressionless, she walked away. I remained composed and patient for a further hour, until the crumbling pain in my hip sockets now had me exasperated. I called for help a second time, in hope that this time I would receive it. The same nurse came back. She stared through me from the end of the bed.
“I could be answering lots of other call bells right now. I could be seeing to lots of other patients. But no, instead I am standing here in front of you”. The silent advocate in me suddenly burst open.
“In all honesty though, you wouldn’t leave another patient lying in pain like this, would you?” I asked.
“But we’re not talking about other patients. We’re just talking about you”, she responded, before walking away for the third time.
“Just”. “You”. Once again, I felt worthless, and unseen, as though I shouldn’t even be there as the ‘patient’.
On my fifth call for help, a healthcare assistant responded to my call bell. It was a good two hours before handover to the day shift, and they were far off from starting the rounds of routinely repositioning the other patients in the bay. I explained that my hip and shoulder were dislocated, a common complication of EDS, and that I needed to swap sides.
“We’re just starting our rounds now”, they reassured me. But my patience was turning as brittle as my bones. It was eventually busted when I observed the healthcare assistants head to the opposite end of the bay, for whatever reason deciding to start back-to-front on the repositioning rounds that morning, despite me asking well in advance to be turned first due to the sheer pain.
“Please –“ I called, as politely as could be in the heat of the moment. “Would it be okay if I get turned next, rather than wait until last? I’m in a lot of pain”. But they smirked at me. Their response?
“You’re a young woman, Alex. You can wait”. And that said it all, and everything more.
Had all these circumstances been the case in a young male patient, I am not certain that the same approach would’ve been taken. No thanks to modern-day culture and social media, anything associated with body image, consumption habits, perception of pain thresholds, or simply just justifying a problem being deemed as dramatised, is more than often pointed towards the young female demographic. I recently read an article on the heart-breaking journey of a fellow ‘foodie’ and young female patient who too shares the same health conditions and diagnoses as I. A chef who cannot eat, due to gastroparesis, as a result of Ehlers Danlos Syndrome, Loretta Harmes was wrongly admitted to an eating disorder facility for many months, simply because she wasn’t listened to or believed when struggling with an undiagnosed rare gastrointestinal issues that nobody thought to investigate. Loretta’s story is, in many ways, although different, a mirrored tale to mine, and the journey she has had to endure is something I too very much resonate with, as it does with so many others out there.
Sadly, we are not alone in this practice of oversight, the assumption so merely a stereotype, that I am almost ashamed to be entering the field of doctoring alongside those who are so ignorant to one whole patient group – one that I myself, as a chronically ill patient, falls under. It concerns me how bias can have such a detrimental impact on patient care and treatment outcomes too, when the wrong impressions and misassumptions are passed down and across teams.
“How long have you been bulimic for?” one nurse asked me within the first fortnight of my long admission. 8 months later, this nurse remained convinced by her original statement that I had bulimia, when I didn’t – though it was not by her own first impressions, but instead by the incorrect oversight of someone who had only seen me as an age and gender tick-box in some paper notes, rather than in person or upon a history-taking. It is thus exactly this that troubles those with invisible illness so much, consumed by this fear that they won’t be believed, purely because from skin’s surface, no pathology is immediately obvious. Too often, it is this group of patients – the young, female, chronically ill – and chronically misunderstood, that hence carry the psychological scars the most; not because their mental health is the cause for their chronic illness, but more so, the burden of their chronic illness is the cause of their struggle to find the appropriate coping mechanisms, because it is never fully recognised as ‘a thing‘, as we slip through further the net, time and time again.
Following my diagnoses of Ehlers Danlos Syndrome, ‘and co’, I was left to fend for myself, at least until I was overseen by a completely fresh pair of eyes elsewhere. Uninformed by what this life-changing condition meant, what it consisted of and what I should expect for the future, how to cope with it, and so on, was daunting, and took up many hours of each lost day in a cyclical thought process of ‘what now?’, ‘what next?’. Enduring weeks of sleepless nights, tears, uncertainties, and discharge dates that were now lost to thin air and false promises, I finally sought the support of a private consultant, and the nationwide charity, Ehlers Danlos Support UK, and joined numerous chronic illness communities, in hope that they could help answer some of my unanswered questions and fears. Having chased an endless tethered string through NHS protocols for so long, I am so glad I did this, and genuinely believe it was the best move I have taken in a very long time, in order to progress forward with ‘returning’ to some form of life. It was a shock to learn that the average time taken to diagnose a person with EDS is as long as 10 years, although I remain equally unsurprised by this sad and disappointing figure, being one of those patients who falls into that category. On the contrary, as miserable as this long, rocky admission has been at times, I have learnt more about Medicine, attitudes in Medicine, and how to be and not to be a Doctor, as a chronically ill patient, than I will ever learn from Medical School as a student, from the textbooks, or from the common topics broadly covered in exam papers. I have learnt that joining the most unrelated of dots together is just as important as separating the odd ones out, ironing out the irregular creases and starting from the very beginning. I have learnt so many things that we are not taught – the oblivious ignorance we show towards select demographics of patients without always realising it, and the dangers of judging these patients, just as we judge them out in society. I have also learnt that, often, if it’s not in the textbook, it’s often deemed by the majority that it’s therefore not real – a huge flaw I am seeing more and more of in healthcare, both in my role as a medical student and as a patient – and it’s something that does neither of us any favours. As doctors, we don’t just diagnose – we are also there to be the detectives, the artists, the storytellers, and the interpreters – all too, humans with our own invisible pathology beneath a thick, untold skin. Having said this, there are some wonderful and fantastic physicians out there who do devote their time and passion to helping the lives of those with rarer conditions – the conditions that sadly have some of the highest track records for psych referrals prior to finding their real diagnoses.
Now, a patient in a major London hospital, I am better understood and at least listened to, even if there still isn’t that full understanding of what this all entails. I am not judged, I am closely involved in every decision to do with my care, and consequently I am happier and more optimistic for the new future I will now lead with this new diagnosis.
It has not been easy portraying this all down on paper. The chaotic and long-winded chronology of it all is reflected in the very manner of my writing, but there is, after all, no easy way to paint the true picture of a ‘patient journey’ when the dips go far below the graph paper. I have had the privilege to spend precious time, treasured by its every second, talking to nurses overseeing my care, and gaining an understanding of how they too often find themselves sucked into the regime of bias and judgment before ever meeting their patients. Given also that it is May and hence Ehlers Danlos Syndrome Awareness Month, I felt it was time to share the realities of a journey surrounding a complex and long diagnosis through an often toxic and unsupportive process.
I have no doubts that this will sadly continue for some time, but now that I have seen it from either side of the glass pane, I am eager to change the way we take medical histories, explore patient bias, and handle cases of medical gaslighting. I will, once discharged from this long hospital admission, be seeking how to better educate and inform both medical colleagues and patients of rarer symptom presentations. Yes, we need role models and ambassadors who help champion speaking up about invisible illness, plus the success stories of those who have found the right support networks and frameworks for managing conditions so many know very little about. But we also need to hear the real truth, so that others know there are people out there who will listen and who do care, not just judge and dismiss. As for me, unassumingly thrown into this whole new world of new diagnoses, I have learnt more about Medicine as a chronically ill patient, than I have, and will, ever learn from medical school. A life of turbulent hospital admissions has been the best preparation, more than ever, for my future as a Doctor; hence I will forever be thankful for my own testing experiences as a patient, for it has opened up a whole new entirety of missed out chapters in an invisible curriculum – chapters and knowledge that will not write itself unless patients like myself continue speaking up from the shells of a silent advocate. Until then, I am a young, female patient, and I know what sexism and treatment inequality in the NHS feels like.
As for the breakdown in trust with my own team of doctors, that I am slowly rebuilding, as my Doctor opposite me, still with his head in his hands, draws out a plan to join all the dots of each specialty back together again, taking each part of my fragmented life (on paper) back into one big reality – that ultimately makes up my story. It is never too late to talk about the things we don’t ever want to talk about. So let’s turn silence towards the listening ear, put short-sightedness before a fresh pair of eyes, turn shame into pride, and misinformation into knowledge. A lack of answers doesn’t mean it’s not real – we just need to be more open to a bunch of new questions, to search harder and further, to have those conversations that have not yet been spoken, to gather together the dots that have not yet been joined, and perhaps then realign the zebra stripes and accept that, in Medicine and in life, not everything is just black or white.