We say it’s “okay not to be okay”, but when is it not okay not to be ‘okay’?; was the conversation I recently had over text, with a friend and NHS colleague whilst I spent the nth time laying in the Intensive Care Unit this week. I wondered who else I could possibly talk to, or not, and if I’d ever be heard in this journey.
In most aspects of life, we are supposed to practice what we preach. That, we are expected to do, in the healthcare profession, when it’s our purpose to advise people, where patients, the vulnerable and sick, rely on us constantly, for us to make the right decisions and act at the right place and time. If we didn’t do this, well, we would be hypocrites, wouldn’t we?
It’s no secret that the mental health of society has been massively hit since the start of the global COVID-19 pandemic, but with the physical and emotional demands of fighting the pandemic from the frontline, whilst having to juggle and deflect spearheads of abuse and conspiracists from every other angle, it’s even less of a secret that our healthcare staff are suffering even more. But, my colleagues’ wellbeing isn’t hanging in the balance just because of the taboo that comes with opening up on their mental health struggles, or that there is little time to address it on top of the day-to-day work pressures – it’s hanging in the balance because we are simply not supported full-stop. In other words, there are not enough resources or services to help us. So instead, we continue ploughing on, toying with a million of our own mind-games, internally.
Sadly, the same goes for patients, both pre-pandemic and currently, though this is old news. For those of us who do find ourselves able to come forward, to seek comfort, reassurance and support for our mental and emotional struggles, we are often turned away – the waiting lists are too long and there are simply too many cuts to services.
I have never really paid much attention to my own mental health. The complexities and endless battles with my physical health has very much taken over that. Yet, even when I was a medical student, working busy days on the wards and in clinics, with even the petty things still lingering from my past, the PTSD from my own hospital experiences, I thought it was all okay, because I spoke about it, and wrote about it openly, on different platforms. Now I realise that wasn’t, and isn’t, enough. I also now realise that getting the necessary psychological support would’ve been a hard-fought fight to win anyway.
What I am sharing in this blog takes on an alternative approach to my usual form of writing, for this is a particularly raw, personal account and summary of what I have experienced in the last fourteen months of my hospital admission, and more specifically, how it has largely impacted my mental health. I realise that I don’t often discuss this area of healthcare and humanity as much as other topics I am equally passionate about, but, given my own recent encounters, and how these may relate to or complement the experiences of others, I wanted to be entirely open in relaying what can often happen, and how flaws in the system can only detriment the health of our patients even further, if we are not careful with our treatment approaches in practice.
In the first three months of my year-long, and counting, admission, I was neither listened to, nor taken seriously. That, is often something that many other young, female patients with chronic or life-long conditions, in particular, experience. Upon admission, I collapsed outside the Emergency Department, barely making it out of the car door. For many weeks beforehand, I had done everything in my power to avoid visiting a healthcare professional about my deteriorating state of health, in fear of everything that I am about to describe. In the heat of that summer evening, I suffered a prolonged seizure on the baking tarmac, vomiting into my face mask and ending up in respiratory failure. I have been struggling with ongoing health issues that have affected multiple systems over the years; gastrointestinal, respiratory, urological, rheumatological, neurological, and so on, all of which had worsened over the course of the first lockdown. Now my health had taken such a major tumble back that I was here, confined back to hospital. Yet, amongst all this, it took just a few hours for a Consultant to summon a Psychiatrist to the ward to see me, not believing the extent of my physical symptoms pre-diagnosis. The Consultant had previously told me on ward-rounds,
“You made yourself come in. You wanted to be here”, followed by “Has anyone actually seen you vomit?” after years of struggling to keep down food or fluids, no thanks to a long-standing gastrointestinal condition that stops the stomach and intestines from moving things along. HIs words hurt. Of course, I was quickly dismissed from Psychiatry review, it being deemed unnecessary, though it wasn’t until I had a name for what I was going through, Ehlers Danlos Syndrome, diagnosed in November 2020, that things changed in perspective, and in the way I was treated as a patient, and person. Little did I know, however, that this period was just the breeze before the storm that was yet to come. I was only just beginning to collect the dust to the cake.
Although I now had some diagnoses, some explanations to validate and justify everything that was happening to me, it didn’t make things any easier. Even as a medical student, these were new, long and complicated terms, each with their own repercussions, prognoses, and a lifetime of side symptoms to contend with. Did anyone sit down and explain any of these to me? No. Was I offered any support or outlook for these new labels I now had, very much with the knowledge I’d live with them for the rest of my life? No. Was I left to decipher it all myself, to find out my own networks of support, the answers to all my questions and uncertainties? Pretty much. And it wasn’t something that I could just accept and move on with, overnight. Still now, nine months on, I constantly wonder how I am supposed to manage my new lifestyle, no thanks to the cards I have been dealt, and I have no shame in admitting that the unknown scares me.
Just one month after my diagnosis, still bedbound and in hospital, I tested positive for COVID-19, just a few days after Christmas Day. The virus destroyed me.
What I saw, and what I experienced, as have many other patients, were things I do not wish upon any enemy to see or to experience. Previously fit and healthy people were now dying in the beds left, right and opposite me, people I had spent days and weeks getting to know, as people, and as human beings, now just these demoralised and exhausted bodies clinging onto the metaphorical threads of blaring machines and oxygen masks bigger than their own heads. As a medical student, I also recognised the sheer, inexcusable conditions my colleagues were under – at some points, an entire ‘red zone’ being manned by only one agency nurse and one healthcare assistant in a whole shift. A friend, who worked as a caterer on the COVID-19 wards, described how he went round cheerfully taking breakfast orders on the closed bays, only to find that the patients lying there had died overnight – with nobody there to sit with them, nor nobody to know of their passing. Every moment lying there, shook me.
Aside the emotional pain, the physical pain, at times, is a pain that’ll stay with me for a long while. The noises that came from my own mouth, shrieks and moans not even I knew existed within me, haunted me, as I begged for it all to be over, for someone to just come and help me out of my misery. One night on the closed COVID bay, both my hip and shoulder dislocated. That, and the bone pain that COVID had riddled me with, on top, it felt like a saw was being sliced through my infrastructure. I called the bell for help, but nobody came. I called for help in person. But nobody came. At the height of my agony, I retched, and vomited up the large tube that went up my nostril and down my throat. With each force of puking, this tube hurled upwards into the back of my mouth, coiling up like a python. I couldn’t breathe and I could feel my head tightening and turning purple. I was choking. But still, nobody came.
Upon eventually being seen to, having had the tube pulled out the rest of the way and being turned onto my front, I was left in silence again; the doors were shut back on us, yet it wasn’t until after that I realised I had no call bell or phone within reach, in case I needed it. Hours later, when the new caterer left a beaker of newly-poured hot coffee on my bed, instead of the table, so that I could reach it, I accidentally knocked it over, whilst trying to wriggle from the stiff position I lay in, on my stomach. With great shortages of bedsheets, pillow-cases, towels and hospital gowns across the entirety of the red wards, I was thus entirely unclothed for the duration of five days. This hot coffee, still boiling, now sloshed down my front, stinging my chest and torso, but I couldn’t move.
“Hot!” I shrieked. “Please!” But nobody heard. I couldn’t move and I couldn’t do anything about it, other than accept I was bathing in a mattress of hot liquid against my skin, now mixing in with the cold bodily excrements of the previous night’s vomit and leaked urinary catheter, that was yet to be cleaned up.
To live with the knowledge that I was one of few, at the time of admission to the COVID-19 zone, that returned to the general ward, is something I have to live with, and not without its surreal guilt. One evening, now back on my old ward, but with new people, I called for help, to ask to be turned over. The pain was becoming unbearable once more. But the nurse came, and just stood, staring at me, unimpressed.
“I have other call bells to answer”, was simply her response, and so she turned away. I held on for another half hour, grimacing from the pain searing through me. I called again. The same nurse returned, standing, arms folded, at the foot of my bed.
“I could be doing lots of other things right now, and I could be seeing lots of other patients. But no, instead I am standing here in front of you”. I swallowed.
“In all fairness, you wouldn’t leave another patient lying in pain, would you?” I asked. Their response?
“But we’re not talking about other patients. We are talking about who, Alex”. I suddenly felt very small and invalid again. The nurse had already walked away. I consequently took it upon myself to try and reposition. I managed to pull the sidebar down beside the bed, so that I could hang out my leg in which the hip joint was dislocated. But the call bell swung away from my grasp, and so I pulled myself over slightly, trying to reach it. In the process, with my leg hanging out over the bed, my upper body wobbled over the side. I fell out of the bed and crashed to the cold floor.
I was found by coincidence. The recorded verdict?: ‘Patient put herself on floor’. I could’ve cried. It took 5 hours to be taken down for a precautionary X-ray. In this time, I was strapped to a spinal board and neck collar, all whilst vomiting some more. Except, there was nobody to turn the board that I was strapped to onto its side. Ultimately, this resulted in choking, and later, aspiration. Even before this fall, which had now left me scared, disorientated, and even more reluctant to ask for help, I had been experiencing a worsening neck pain. I alerted the nursing staff to the increasingly red and swollen site around the central line in my neck, but there was no time or patience left.
“For goodness sake Alex, your neck is NOT fractured! There is nothing wrong with it, so move”. Over the course of the next few days, I was scolded for not moving my head freely. I winced in pain. The other patients on my bay, of whom their new presence I cherished, having not seen any younger patients for so many months, mocked me, and laughed each time I needed a nurse. I felt trapped, and boxed in, flashbacks from the delirium I suffered back in 2018 during 3 weeks on life support in ICU, riddling me, a full reminder as I lay in coffins and small boxes via the closed blue curtains. I asked the nurse to open them, only, when she left, the other patients got up, drew the curtains back around me, and laughed in unison.
In the time I was left, I spiked a temperature. To say that I was feeling foul is an understatement, but I was too embarrassed and afraid to ask for help again, given the cold reception I had received not long before. Later that same night, my fever heightened. By the early hours of the next morning, I had gone downstairs for scans, which revealed a septic blood clot in the vessel of my neck. It was a blood clot and sepsis that was causing me all this grief, the neck pain – yet again, nobody had taken me seriously to investigate the problem sooner.
When I experienced an excruciating episode of retention and spasm despite catheter placement, I had to chew on my pillow to silence myself. The nurse came in and reprimanded me.
“You need to stop crying, because it’s not fair on the patients”. These same patients were chatting away whilst I wriggled and writhed, clueless as to what to do with myself. I had needed to ‘go’, but to my embarrassment am unable to do this independently. I asked for a bed-pan, in case I needed to defecate from within the bed. Gloves on, and trying to relieve myself in peace, the nurse came back in, only to whip the curtains open. I was covered in sweat and goose-bumps from head to toe, the pain so bad that my teeth were chattering. Faeces filled the bed.
“You need to be quiet and stop crying!” she shouted again. Followed by, “and quite frankly Alex, you need to get your hands out of your backside!” I could hear the other patients snigger. I was mortified, and devastated. Through tears, I reached out to get my phone, to call my family, but this nurse snatched it out of my hands, along with the call bell, putting both aids to call for help, out of reach. She stormed back out, whipping the curtains closed behind her. I was left again, enclosed in the shadows of my dark, blue, and very lonely, box. I spent the rest of the night under a blanket of soiled sheets, next to a bedpan of poo, shivering.
It was at this point that I realised, not only had COVID-19 traumatised me, but also the remnants of my past experiences with ill health too, and how, with no advocate or support here on the ward, my voice was getting quieter and quieter. It was deeply troubling me and I was desperate for help, for someone just to talk to. My family were unable to visit due to the pandemic’s guidelines on visitor restrictions, and the trust I had, although close-knit with some nurses, was very variable with others. On the next ward round, I asked to see someone – 7 months into my hospital admission and I needed to address my mental wellbeing. One would’ve thought that, given the haste in the previous Psychiatry referral when a rather disconnected Consultant wanted to prove a point, that I would not have to wait long for this moral support. But, I couldn’t of been more wrong. Instead, I was told that I would not be able to have psychological support because it was “only available to patients who had been on the COVID-19 ICU for a particularly extended period”. I thought about all those patients who had been awake and alert enough, though still very unwell, to have the misfortune of witnessing the horrors of suffering all around them. And so, what about them? What about the rest of us? Was there thus this expectation for us all to just the what we had seen and we had experienced ourselves? I resorted back to silence, and to the automated response of smiling and subtly nodding, each time somebody asked if I was okay.
Unsurprisingly then, I was filled with apprehension and uncertainty when I was transferred to a more specialist London hospital, four hours away, in March 2021. Throughout all this time, I had been imprisoned within the four white walls of a hospital, my voice being slowly but surely shut out. With a new view from beside my new bed, the windows were misted by the hazy sky, the new sun a symbol of withered hope and new Spring, though my reflection was unfamiliar and a complete stranger. Having not seen my reflection in so long, I now no longer recognised myself or my identity, shaken by this new person – a gaunt shadow of my former self. Nevertheless, this new place, new ward, and the new nursing staff, became my new home and new family – one of whom became great friends and colleagues too. I will forever be grateful for their kindness and care, something of which I have seldomly experienced in other areas and aspect of my health journey. Still, my new family could not help me mentally, because, up until the latest few weeks, I continued with the act of the ‘brave face’, smiling, laughing, conversing on all things life outside of the hospital, in every attempt to brush aside the ever-gaping emotional cracks.
However, my new bond and trust in a new team had me reluctant to raise another old scar from the wounds of my past, in fear I’d become “too complicated”. In particular, each time I was allocated a male nurse, each and every one so kind, professional and patient with me, I couldn’t help but turn rigid, quiet and uneasy. I had, of course, all this time, been entirely open about my experience of sexual assault back in 2016. Another time of trauma, with my life being wobbled upside down, it took a lengthy statement at the police station, a year of protocols and investigation, a daunting Court attendance and an eventual sentence, to put a closure to that snippet of my life – still, I never expected it to come back and remind me when I least expected it.
Another four months down the line and I was still pleading for psychological support on a daily basis. But, with the complexity of my physical health, and the sheer volume of referrals and investigation required, interrupted time and time again by a second, third, fourth, fifth bout of sepsis, and unexpected vascular findings, any attention or concern for my mental wellbeing went astray, lost in the pile of less urgent things to address.
When I was told there was nothing more the doctors could do, it all becoming more apparent that any further intervention, without second opinion, would be too risky, I shut off to the world entirely. It was the last thing I needed to hear after so many months of great suffering and little direction. With continuing TPN being my only hope and last resort, this too was now no longer possible, no thanks to the unexpected finding that I have no patent vessels left in the entirety of my body, mid-20s, except for two small, remaining veins in my legs. It was now a toss between continuing to become more nutritionally deficient and weaker, or to undergo a potentially lengthy transplanting of vessels, only to be at very high risk of bleeding out on the table. I protested in desperation, asking if there was surely something else that could be done.
“Do you want to die then?”, the Consultant scorned bluntly, before abruptly leaving my side-room. I had nothing left.
From then on, there were occasions where I had to remove my hearing-aids during the ward-round. To some, it may’ve appeared cowardly, immature, incompetent. But for me, I was just so incredibly tired, and even more spectacularly broken, by bad news after bad news, after bad news, that I froze at any appearance of a Doctor, knowing that, whatever they had to say, would not be good. I. Could. Not. Physically. Take. Any. More. Scared to be upset or offended, I would turn rigid, shake, and sob, unable to make any eye contact, as an overwhelming number of people shuffled into my small side-room on the ward round, glaring from the end of my bed with such intimidation, not one of them warming or inviting in their demeanour. It reaffirmed that this really was it – this was really the final point where nobody could help me.
During the latest few ward rounds, my plea to not be involved in the intense discussions around the bedside, had me physically trembling in fear, shaking from the act of stopping myself from crying, jaw clenched tightly and tears pooling on the spot from the corners of my eyes. To my utmost horror and frustration, one Doctor on this ward round, of whom had clearly observed my distress (but did little to step in and help), has since documented that, in this time of being so distraught that I was shaking and trembling, I was having a “factitious” seizure. This entirely miscalculated, incorrect assumption and beyond throwaway comment, has now very likely cost me the rest of my recovery journey, as I lay exposed to unnecessary misjudgement and thus even greater, more harmful dismissal of any future medical involvement by other overlooking healthcare professionals. This, has since destroyed me, for I know too well how misinformation or incorrect language can influence decision-making and treatment approach in Medicine. That, in itself, has been another deep wound perforated into my case. Yet, it has also blessed me with the knowledge on why so many patients with complex chronic, multi-system conditions dislike attending medical appointments, opening up to healthcare professionals, and seeking medical attention when they need it, more than ever. And I honestly, wholeheartedly cannot sympathise with this category of patients enough.
Prior to my knowledge of this reckless commenting on the Senior’s behalf, I nonetheless continued asking after any sign of a psychological or counselling referral. Only, when the final straw was pulled one afternoon ward-round, I spent the entirety of the night howling into my pillow, wrecked by sore tears and a weak, exhausted mind. Yet again, they turned their heads away to my concerns, and left. I wanted to end everything. And I said so, too. In the heat of the moment, I didn’t see this as an act of killing, but rather, just an act of dying – not physically, but an act of simply finishing all this never-ending pain and frustration I was undergoing, that nobody could do anything about. It was only then that someone finally came to see me. It also turned out to be as fruitless an intervention as everything else…
Again, I was dismissed from referral, having concluded there was no clinical indication of any depression. But I still so desperately sought for something or someone to help me work my way through the complexities and challenges of a very long hospital admission, of a scary and unpleasant duel with COVID-19, to come to terms with the diagnosis of a life-long, life-altering condition, to talk through the dealings of old scars and experiences of multiple ICU admissions and other unpleasant encounters– all undoubtedly aggravated and inflamed by the heightening of an isolating, alien and succumbing pandemic. All I wanted, was to be acknowledged, listened to, my struggles and experiences validated, not met with defensiveness or critically justified by someone who has never, and will never, wear my shoes.
They did come back. Only, rather unsurprisingly, none of the above was actioned upon. Instead, I was ushered aside with a jargon of nutritional advice – asked if I had ever eaten yoghurt or drunk Kefir, to “think positive, happy thoughts” before I felt nauseous, and that, if I abided by these two pieces of fleeting advice, that the entirety of my health issues would suddenly and completely vanish.
Some days I am able to forget this continuous cycle of events, sometimes monstrosities, atrocities, and dramas. It helps me to think of them simply as ‘life events’, and that, if any of my traumas or experiences can benefit another person even the slightest, then it’ll all be entirely worth it. On other days, it is all I can think about, plus the madness that is not being able to access sufficient mental wellbeing support in today’s climate, and it is honestly like an omen tattooed across the forefront of my mind, day and night.
I recently had another admission to ICU, all of which may well have been avoided, had I been listened to, and my concerns acknowledged, sooner. But then again, the same old story goes, that it is then always too late – too late that the physical traumas have already left behind the mental scars like black marks in the book; no yoga, clapping or nutritional advice will ever change that.
It troubles me to know that so many other patients out there are probably feeling their way through the same labyrinth of dark tunnels. Of course, I cannot comment whether this is because the “system is broken”, because, at the end of the day, I am ‘just’ a patient, and medical student, in this narrative. But what I can say, is that I know there is so much more that can be done to support and advocate for all our mental wellbeing – for the patients who battle chronic and lifelong conditions, for those who have lived through prolonged admissions where the NHS has become their ‘home’, and for those who work the frontlines to somehow keep the system knit together, despite all its breaks, and cracks, and irreplaceable tears. And it can only be promising to see great mental health ambassadors, such as Dr. Alex George, working in this area to change things for the better.
In the meantime, I will continue to reflect and document all these happenings in the way I reflect best – through writing, through acknowledging, and through sharing – and it’s all thanks again to one of the wonderful, most wholesome, and best-practicing nurses I have been cared for by, who encouraged me to keep writing and to keep telling my story aloud, that I have sustained peace with the million mind-games I have often had to play with in my head. As for the rest of you, in times like this, especially during this pandemic, though a million minds may very well be astray, somewhere, someplace, you too, are not alone. After all, it is okay not to be ‘okay’. For us, the journey continues…