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The Lost Patient

I did indeed have plans for far more constructive content coming up; the chronological and informative kind, but as we all know too well, life doesn’t always work out that way, when you’re a patient with chronic illnesses.  

Instead, I have found myself tied down with all things medical school – returning to clinical placement after 2.5 years out has been overwhelming, but overwhelmingly good, exciting, and on the whole, positive.  But I also became tied down by the very inevitable recently – another dreaded hospital admission.  

I had run myself a deep, soothing bubble bath, after what had been another incredibly long day on the wards. I felt accomplished, satisfied, and in good spirits, despite the niggle of pain I had been trying to ignore for many weeks, if not, months.  After all, what good would it have been in addressing this? My past experiences of being a rare disease patient had taught me that, if nobody cared about me, why should I bother caring about myself? Stood there, I looked down to see my stoma stie bleeding profusely, the gauze beneath it saturated and red, blood spurting out, though unclear from where or what direction. Very much on my own, I stood there, in the nude, the bath math soaking in a blemished wine-like stain, trying to process what to do next. I didn’t want to call any of my friends, not that I had very many to call. I lived alone but still hated being ‘the burden’ or ‘hypochondriac’ if I called them (who, by this point, were all qualified doctors themselves).  Nor did I want to call my family, whom, 200 miles away, would only worry more by the fact that they could do very little from such a distance.  And the last dilemma – I absolutely, most definitely, categorically, was NOT going anywhere near a hospital. 17 months bedridden in hospital, only to spend much of it being gaslit and disbelieved, traumatised, and now neglected, by having no network of support or overseeing consultant or care, it was the last place that would offer any sort of respite or safety.  Instead, I continued standing there, shivering slightly, upon the bloodied bathmat, muttering to myself in annoyance:

“Well stuff this.  Stupid body”.  

Eventually, I ‘gave in’, and fumbled into the darkness of my bedroom, now very late at night, for my phone. NHS 111.  Maybe I’ll reluctantly get a GP appointment in a few weeks. If I hadn’t bled dry by then. Ultimately, what followed, was an urgent doctor’s visit out to my house at 2am, which I was very grateful for. Leading the doctor up to my living room where I lay on the couch to show him my bleeding stoma, I left trails of blood drip-dripping along the carpet.  

“Where are your other housemates? Shouldn’t they be up making sure you’re okay?” I told him that I lived alone, and in all honesty, felt very distant from anybody else. In fact, I hadn’t seen any of my classmates for months, years. Maybe I was a nobody.  

I went up to the hospital. I was a mess, and in pain, but I laughed it off. I had been conditioned into thinking this was all very normal, and nothing to raise a voice about. That lost, silenced voice of a non-textboook patient.  

“Who are you under?” they’d ask. “Which doctor is overseeing your care?” The answer? Nobody. Between the two separate systems of NHS Wales and NHS England, I had become completely lost from both, and now had nobody to go to, no point of contact, despite having a multitude of debilitating symptoms and conditions, and a completely non-functioning, infected piece of plastic protruding from my stomach. Turns out, nobody could do anything unless I could track down the surgeon who did my initial operation – a surgeon who neither saw me before or after my procedure, and never came across again. To him, his work was done, but it was unfinished, and unaccounted for.  

“Well why don’t you get referred to Dr. X?” they’d ask – the very same consultant who had spent the entirety of my long admission gaslighting me and brainwashing me into believing I had “made (myself) come in”, that I “wanted to be here”.  

“Absolutely not”, I said, through shudders of flashback and trauma. So they just shrugged.

“We can’t help you”.  We were all lost.  

Meanwhile, the patient in the cubicle next to me had just seen his doctor. From what I had gathered, through a nosiness of interest through the thin thread of the curtain, he too had a long-standing condition which had flared up and caused him to come in. But his consultant was kind, and the banter was upbeat.

“Great to see you again!” they conversed.  A plan was put into place and the consultant promised his patient that he’d be on the case and make him comfortable.  It was like a reunion of old friends almost.

I lay there, thinking to myself, ‘Wow. If only every Doctor was like that. If only every patient had access to that kind of support, and follow-up’. Perhaps it was because he was a middle-aged man, and not a young, female patient, whose symptoms are almost always attributed to hormones. Or maybe it was because his diagnosis was in the textbook, something we all get taught on in medical school and hence are familiar with how to treat it, hence it mustn’t be “in the head”. 

The bleeding from my stoma site had now staggered and slowed down slightly, though the skin surrounding the area had become burnt, blistered, and sore.  The attending doctor was sorry he could not help me any further, of which I was grateful for, at least by his kindness and acknowledgement. I, of course, already knew that’d be the answer. After all, I was a lost patient, very much lost in the system.  

As a financially struggling student, I had no choice but to walk it home, tired eyes black, sluggish, and sleep-walking. When I got in, barely able to bend over from the pain, I noticed my fridge was empty and kettle dry. Upstairs, clothes were strewn across the floor where I had frantically tried to get ready for the doctor’s visit the night before. And my deep, soothing bubble bath was still full, and waiting. Yet stone-cold. Of course, these were all things I could easily rectify myself. I could re-run the bubble bath, order some food in, fill up the kettle and pour myself a hot cup of tea. But I was tiredSo incredibly tired. And I realised then what the difference between being alone, and lonely, meant. And lost. It would’ve been nice to be picked up and taken home. It would’ve been nice to just be able to crash into bed whilst someone else brought up that hot cup of tea. It would’ve been nice not to have to worry about what others would think about you if you presented to the hospital in the time of need. But, too often, patients like myself who live with chronic illness, and more so, the rarer kinds of chronic illness, we are often left feeling even more deflated, by the very fact that we can’t be helped, we can’t be followed up, and we can’t be treated in the same way as the middle-aged man in the cubicle next-door. Because we are not textbook patients, and the system was never built for people like us. Hence, we are lost from the pages, lost of all support, lost from the system when we get ‘too complex’ or passed on from healthcare professional to healthcare professional. Surely then, it’s about time we are found, and concreted in the cracks of this outdated, stigmatised support system. Don’t you agree?  

Author

  • Alexandra is the UK's first deafblind Doctor-in-training. She is the founder of the 'Setting Sites' blog, the creator of 'Faces of the NHS,' a TEDx speaker, and has multiple health conditions including EDS. She shares her experiences on Article 999 both through the perspective of a medic and a patient.

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