Chronic

Photo by Kevin Kandlbinder, CC BY 4.0, via Wikimedia Commons

chronic

/ˈkrɒnɪk/

adjective

1.

(of an illness) persisting for a long time or constantly recurring.

2.

INFORMAL•BRITISH

of a very poor quality.

“the film was absolutely chronic”

In the post-Covid era, we’re suddenly hearing a lot about chronic conditions in the media, in a way that previously was not the case. Estimates for the prevalence of Long Covid vary but is thought to be around 40% of all those unfortunate enough to contract the virus-which two years in seems to be most everyone. Indeed, how we define ‘long’ also varies; in the UK the NHS defines it as lasting longer than four weeks and the IDSA in the USA specifies a minimum of eight weeks of persistent symptoms. For those self-christened ‘Longhaulers’ from March 2020, two years on without the solace of understanding why it’s happening them and without respite from symptoms that makes every day a morasse of physical and neurological pain, either definition would not seem very long at all.

Another reason, is that GP’s themselves are suddenly discovering for themselves the daily reality of insipid, generalised symptoms that available diagnostic tests simply don’t capture. They also seem to be discovering just how incapable the healthcare systems we have at the moment are at dealing with patients experiencing these conditions. Tragically, there have been several reports in the media of despairing doctors even taking their own lives due to the impact it’s had on their physical and mental health and quality of life, and still more of GPs who have been forced out of their own practices by unsympathetic colleagues struggling to cope with patient numbers and unwilling to carry the weight of colleague clinicians who have fallen ill in the course of their work. So, the medical system is proving itself to be ‘chronic’ by the informal definition of the word too.

My own experience of trying to navigate the UK healthcare system is one that doesn’t start with the Covid 19 first wave in 2020, but back in 2016. This was a condition from which I had recovered just in time for the Covid-era to begin. Having barely felt I was beginning to tentatively re-inhabit a body that was again fully mine again after four long years of battling to solve the ailments that plagued me, within a matter of weeks reports of long-Covid would filter through the press and instantly inspired dread: eerily familiar in their descriptions of symptoms that sounded all too much like those I’d experienced with Lyme. Suspicious that my ravaged immune system would be susceptible to Covid after-effects too, I was incredibly careful with masks and social distancing but by this point believe I’ve contracted the virus no less than three times.

Knowing just how poor the NHS had been at dealing with these kind of conditions before, the anecdotes of disappointed and disillusioned Long Covid sufferers that grew into an eventual cacophony of malaise chimed exactly with my own past personal experience of navigating treatment pathways: the GP that phones the Infectious Disease ‘expert’ in June, who summarily dismisses the possibility of your condition being infectious based on nothing more than “probability.” Another GP (it’s July now) tells you it’s “probably” flu. It’s a sinus infection says another (now August) who gives you immune-suppressing steroids. It’s stress says the next (October). Months then years of your life pass, ‘normal’ functioning becoming more and more of a distant memory. Muscles waste, hair greys, skin loses its vitality, lines around the eyes grow deeper.

The Infectious Disease ‘expert’ you eventually get referred to in December, some six months after the fact, spends a cursory two minutes palpating your glands and then fifty-eight minutes explaining why in fact these symptoms are “probably” stress. This ratio-of curiosity-versus-care becomes a permanent feature of engaging with ‘the System’. Incidentally, a scientific approach might test that hypothesis by testing your Cortisol levels to see if you’re out of range and indeed evidencing chronic stress, but for the NHS gurus in Infectious Diseases such banal processes are clearly not required. Conversely, your blood work shows classic inflammatory markers that would indicate ongoing infection, but of course, why would that be significant? It’s “probably” stress after all.

The Neurologist you eventually get referred to the following July (a year after you became ill) deigns to perform a grip strength test as part of the ongoing theatre of care, and from this summarily tells you that you have a Functional Neurological Disorder. No MRI, no EEG required, as co-incidentally this condition won’t show up on expensive hospital diagnostics, but its a convenient catch-all diagnosis that comes with the assurance “it doesn’t mean your symptoms aren’t real, we just don’t know what’s causing them.” No follow ups, no referrals, no treatment. You’re 35 years old and for no clear reason you’ve spontaneously developed an untreatable neurological condition that can’t be tested for.

The elephant in this room is the word “Lyme.” Unknown to me back in 2016, speak it and any clinician you come into contact with will visibly bridle, drawbridge rising and expressions becoming steely and unsympathetic. It doesn’t matter how polite you are, or how careful not to wound fragile professional pride: use the “L” word and previously gentle, friendly faces suddenly transform into a dead-eyed rictus and there’s a thinly veiled hostility that accompanies every interaction. Gradually, you just stop engaging unless it’s your employer that requires certification for absence-for all the passive aggressiveness one thing I can’t fault the NHS for is their willingness to throw sick lines at you if it gets you off their waiting list.

Remember that phone call to the Infectious Disease ‘expert’ months earlier, and back when a blood test for Lyme might have actually shown some kind of value? It’s worth mentioning that he’s only ‘expert’ about Lyme in the sense that sometime back in the 80’s when he was trained, he might have read a couple of lines in a journal about it: he’s not specialised in the condition like Oncologists have with cancer. With no CPD offered specifically dealing with the condition by the NHS in the interim (this Royal College of General Practitioner’s Toolkit might be the closest thing you’ll find), the response to my formal complaint about my treatment showed that they either don’t know or won’t acknowledge any of the hundreds of studies I cited that have emerged into the contested scientific realm of Borreliosis, since the one study they cite by way of response not only pre-dates these, but was authored in the 1980’s. You can take a horse to water but you can’t make it think.

Nor will they want to recognise that even the manufacturer of the supposed “gold standard” test for Lyme disease states that it’s not to be used for clinical diagnosis because it’s not reliable enough, with sensitivity so variable that even in the best labs it doesn’t surpass 80% accuracy, and in some, it’s as low as 15%. A test that was developed for Reporting purposes only has wordlessly become the litmus test for clinical diagnostics, and heaven help you if you don’t test positive using it.

So, we’ve a distinctly unhelpful situation with contested science, and unreliable diagnostics. Maybe if you test negative, you don’t have it. But maybe you do. Or, alternatively, if you do test positive, it can just as equally be dismissed as a false positive depending what suits the narrative best: I’ve heard many accounts of even those patients fortunate enough to have developed the “classic” bullseye rash being told this despite subsequent positive tests due to experiencing continued symptoms after taking the mandated two weeks of Doxcycline. They too end up being treated as hypochondriacs and hysterics.

Recently, I read this story of a clinician recounting her experience of not testing positive for Covid but developing classic long-covid symptoms and being dismissed as neurotic, and all these feelings come flooding back, so I wonder again “what chance do the rest of us have then?!”

Is this science? With the unreliability of testing and the inconsistency of its application by practitioners who may opt for one or the other-or insist that if you didn’t have a rash you simply can’t have it-you would be forgiven for thinking its something closer to reading tea leaves. And this is before we even come to ongoing RICO and Sherman Act Anti-Trust lawsuits against medical insurers and the clinicians they paid in the process of ‘scoping-out’ Lyme Disease as a recognised chronic condition, thus denying patients suffering from it treatment. Having inherited treatment guidelines from the IDSA in America, the NHS would do well to take note of these accusations and revisit the science from an independent vantage.

In the midst of this political and economic football, normal people are struggling for their lives, and through engagement with charities and online forums, the stories I’ve heard show me that I’ve been fortunate in ‘just’ losing a meagre six years of my life to chronic illness. I can’t tell you how many people I’ve heard that developed suspected Lyme as children decades previously and have lost out on everything: university, marriage, jobs, children all made impossible by a condition that most practitioners in the NHS don’t even seem to acknowledge is real. This doesn’t bode well for those children emerging into the post-Covid era.

During these last six years, I’ve collected my own anecdotes from the NHS staff I’ve come into contact with who, curious why you’re back (again) for the same blood panels they’ve done a few weeks previously, privately share their frustrations: the nurse who was repeatedly went to her GP with stomach problems only to be told that she was depressed, who then discovered she had an ulcer but because in total desperation she begged a colleague in A&E to intervene with an Endoscopy. Or, the trainee Neurosurgeon who couldn’t get his painful shoulder treated “for love or money” but lamented that “every junkie who bangs their head off a Police car door gets an MRI incase we get sued.” At every level I’ve heard stories from the NHS’s own staff dealing with the frustration and alienation that accompanies a refusal to even offer those tests that might be available to diagnose their ailments, only to be told that actually it’s “probably” psychological. It’s a strange type of solace to hear these stories as much as it’s also quite disturbing.

That you and your partner fell ill with the same symptoms at the same time after a camping trip to a Lyme endemic area, going from very fit, active people to barely able to creep up the stairs using a bannister rail is also not commented upon then or in future: instead she has “chronic fatigue” you have “a Functional Neurological Disorder.” You spend your own money on private blood tests developed by specialists in Belgium and Germany which return positive to be told “If you pay them of course they’ll tell you what you want to hear.” Does that same statement apply to the thousands of NHS consultants who also work in the private sector, I wonder? Perhaps I’ve just paid the wrong people in that case. It’s also worth pointing out that after paying for these tests, they could easily tell you you’re negative: they already have your money so where’s the profit in then falsifying them? The NHS Infectious Disease Guru-come-Savant will not answer, but advises against “listening to hypochondriacs on the internet.”

Fast forward seven months. Waiting for the Neurologist to give me her “diagnosis” (both in her bland pastel-coloured office studiously not mentioning the suspicions of Lyme that you know she’s read in your case notes) then asking her to explain these Lyme-positive private lab results I was greeted with a look that would sour milk, and open hostility. She can’t comment. It’s not NHS tests. Bubblegum pink, manicured nails garnish fists visibly clenching along with her jaw and you can clearly discern that that’s the end of your appointment. The follow up letter that would normally be sent to both patient and GP after a specialist consultation never arrives however, so maybe she’s hedging her bets after all, or maybe she just doesn’t feel inclined to even comply with that cursory formality either. Too unwell to take on the inevitable stress, I’ve never pursued getting a copy of my medical records to check.

In all this, I can forgive not knowing. I can forgive accurate tests not existing because they’ve never been developed, even if that’s clearly what is required in the case of novel pathogens be they Borrelia or Covid. I can forgive the uncertainty surrounding symptoms that don’t put you in Accident and Emergency, in a system that’s oversubscribed and purposely underfunded. What I can’t forgive is the insistence and eagerness of flushing patients who don’t conform to classic treatment pathways down into a system of non-diagnoses that guarantee-not just no treatment-but the stigma of being bracketed into conditions that seem to be used to absolve current and future clinicians of any kind of burden of care. “FND”. “Chronic Fatigue”. “ME”. Will this greet every NHS clinician who looks at my file, forever? Why is it that individuals within this system, knowing its flaws, are equally disregarded?

For me, as someone who believes in scientific rigour and that any theory worth the name can be tested, I don’t recognise how I’ve been ‘diagnosed’ as representative of the term. Yes, stress can manifest itself physically, but if a patient can openly talk about their mental health and is convinced there is a physical reason for the penetrating headaches, brain fog, arthritis and a menagerie of other transient symptoms, perhaps you’d better be pretty sure before asking them to resign themselves to the supposedly unassailable diagnosis of the ‘non-expert experts’ that populate the NHS’s £175billion a year funded edifices, of an untestable, untreatable, unknown condition. Treatment based only on the balance of probabilities, or treatment that only targets symptoms and not the causes, means that outliers with chronic conditions are doomed to a diagnostic no-man’s land.

Returning again to Long Covid, two years in the NHS in Scotland has no specialist clinics to deal with this novel condition and there’s no sign of them being created despite the clear demand. Perhaps it’s just not reached that political or economic tipping point that would make it expedient to do so.. My now ex-manager at work, who somewhat skeptically but politely dealt with my long-term absences due to Lyme in its latter stages (while I was frantically self-treating at home using grey-market drugs ordered off the internet according to recent research that serendipitously has been done by actual experts at Johns Hopkins and Stanford), suddenly starts soliciting advice and support from me regarding her own health as she struggled with Long-Covid. She too, is being asked if really it might not just all be in her head, and despite going through the same treatment pathways, and despite testing positive for Covid at the time, is unceremoniously spat out the other side with a Chronic Fatigue Syndrome diagnosis.

If all the NHS can do in response to chronic illness is turn a symptom into a label, then what is it worth? I’ll happily clap on a Thursday for the brave and selfless people who worked on the front line during a pandemic, working long hours with insufficient PPE at unknown risk. However, the anecdotes of thousands of people dealing with Long Covid can now be assimilated with those who have hitherto been dealing with Lyme, ME, CFS or Fibromyalgia-and I would know because I’ve spoken to them in cramped Hyperbaric chambers during interminable and ultimately useless treatment sessions offered by charities, read thousands upon thousands of forum posts from desperate, scared people from every walk of life. And Lyme patients too, despite years and years of lobbying to parliament, are still waiting on specialist treatment clinics and for the required initiatives to take the heat out of the scientific debate to be implemented.

The NHS says “a few” but others recognise that as many as one in five people who test positive with Lyme will not recover prior health, and develop a chronic condition. For those who don’t test positive but go on to develop chronic illness-and we don’t know how many people that is because they don’t collect or publish these figures-they don’t even get the frugal comfort of the increasingly contested ‘Post Lyme Syndrome’ diagnosis, which curiously shares exactly the same disease it’s supposedly derived from. You can argue the science as it exists if it pleases you, but from experience I can tell you that the net result for thousands of people is complete alienation from the health system as it exists. Perhaps a lucky few will have GPs with a modicum of compassion or concern and who might keep lobbying on their behalf with referrals or even just a sympathetic ear, but for the rest who live with the Russian Roulette of constantly changing Locums or openly hostile and unapproachable permanent clinicians, there’s nowhere to go.

As a result, I’ve awoken in the night with stabbing pains in my chest at 3am, genuinely wondering if I’m having a heart attack, but instead of calling 999, illuminated my phone and contented myself with Googling the symptoms. Radiating pain in chest. Difficulty breathing. Sweats. Possibly heart-attack. Does it feel like it’s radiating from your shoulder? Possibly Costochondritis. You know that Covid is a pro-inflammatory condition, and you’re only 38 so you take some paracetamol and try to ignore the pain or the lingering doubt, and eventually after a few days it abates. Wash, rinse, repeat with every other acute or diffuse symptoms you experience over a period of months. It’s been a long, lonely road since buying my first anti-biotics online and subjecting myself to barrages of treatments in the vain hope of vanquishing Lyme, and one that’s come with no small degree of fear for the potential ill-effects.

My only solace is that managing and ultimately curing myself of Lyme has been great preparation for dealing with the ongoing effects of both Covid and the subsequent misfiring of the mRNA vaccine I was administered that’s proven to completely debilitating for both my partner and I for almost nine months now. I no longer lie awake at night wondering if and when I might come across a doctor worthy of the name, or questioning what and how I will find some kind of respite through these institutions. Trying to get exemption from future vaccines in light of these symptoms is acutely stressful but also morbidly amusing when you ask them to provide you with the clinical guidelines that are being used to determine who should be exempt or not: they don’t give you them because they probably don’t even exist. It might be that enduring mistrust and disappointment means I’d rather die in a ditch than engage with public health services again, but even in this I’m not sure I’m entirely wrong: if you can’t trust the people with the power to grant or deny life altering treatment to make basic decisions based on rigorous science then cutting them out of the picture seems to be a positive thing to do.

What is harder to accept is the ongoing cost that this has burdened me with: between private diagnostics, treatment, supplements, lost earnings and missed opportunity I simply can’t quantify the collective impact that these events have had on my life. At best you could say it’s institutional indifference, at worst you could say that this outcome-and its financial implications-is one designed by a system seeking to cut costs wherever possible. Passing people like me off to fringe private practitioners or just leaving them on the scrapheap is evidently the default strategy. Approaching 40, I find myself wondering that despite having fought to achieve multiple degrees alongside full time working in my early adulthood, that none of this early promise will be fulfilled. A meaningful career, a home of my own, or basic good healthcare are basic things that I am not sure if it’s realistic to continue to aspire to, as it all hinges on the questions “Will I get better? And if so, when?”. Instead, I worry that I’ll be caught forever in a trap of chronic ill health and poverty. Ultimately, such is my distrust and disappointment in the NHS for me I can see this leading to emigration, of course, health permitting. And even if health services elsewhere aren’t much better at least the letters “FND” will no longer haunt my medical records.

Welcome to “world class” healthcare in 2022. ‘Chronic’ indeed.

--

--

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store