A tale of two minds – Sharing understanding of Long Haul Covid.

After my last post, I’ve had many people asking me about my personal story with COVID-19. It’s always hard to completely separate the feelings and challenges I face as a patient from those as a doctor, as my medical practice often influences the values by which I choose to live my life and vice versa. This is a very personal account of how I perceived the world around me, at a time when I was living with so much uncertainty.

Patients with medical backgrounds do have a unique dynamic to their health seeking behaviours, but also have insight into the vulnerabilities of the systems in which they work. Large numbers of health care professionals have indeed caught COVID-19, and many worldwide have unfortunately died. It is natural therefore that concerns about their symptoms may have arisen out of their own very real professional experiences with patients, particularly as so much of what has happened has been both unexpected and unpredictable. As much as I have tried to manage my symptoms, monitor my parameters, and hold onto the belief that this is a self limiting virus, whenever my uncertainty had increased I’ve had to seek opinions from professionals.

I can appreciate therefore that for non-medical patients to self manage, new and unusual symptoms during this pandemic must be extremely difficult. They must be able to access relevant professionals, as wisdom from their established support networks have also been disrupted by social distancing advice. This holds even more truth due to the lack of experiential reference for reassurance about what to expect and do to cope, and many will turn to online forums for answers from other sufferers.

I am in my 30s and in good health. I historically have had little need to seek advice from my own GP surgery over the years. However I would have valued continuity with a regular doctor during this time. COVID-19 has led to significant changes in the way we all engage with healthcare. Same day triage systems rather than prebooked appointments to help surgeries manage surges in demand, have meant choice of clinician is not always guaranteed. Patients now more often than not will consult with an unfamiliar clinician, initially via telephone or videolink due to safety concerns of allowing carriers to come into healthcare settings and to limit the spread of the virus. This is the reality of modern day health care, and both clinicians and patients alike have reservations about this being their preferred healthcare model.

Even in my own practice we have been proactive in implementing measures to keep both our patients and staff safe, and to prevent our health centre from becoming a site where people gather for appointments and could potentially transmit disease. This has meant we have not been afraid to adopt technology for doctors and patients to communicate. However, the improved convenience of digital access has a double edged sword with reduced face to face human contact. Balint’s ideology of the “Doctor as a drug” could be said to be a treatment with reduced potency if the clinician’s voice is heard only through email or text; the resultant tip in balance of familiarity, continuity and a therapeutic and trusting relationships with the family physician in place of access and convenience will be a legacy that we have all juggled with for many years, but has been enforced by the Covid pandemic.

The public has always expected a lot from doctors, yet we too are learning and having to adapt. There has never been a more pressured time in the NHS, where despite the sheer dedication and camaraderie, the volume of COVID related issues has led to many doctors in both primary and secondary care burning out. Work is unfamiliar, and tools that we would previously would use to manage our patients - trust, knowledge, referrals and investigations have all been affected by the pandemic. Tasks that would have been simply managed now require clinicians to process information arising through an unfamiliar context, which is effortful rather than instinctive.

I can however relate to the frustrations experienced by patients too with unmet expectations. But there has been no other way for the NHS to cope with the potential for carnage. When acutely unwell, I too experienced consultations where doctors admitted they were forced to do a double take on tests they would have routinely offered pre-pandemic, as in the early stages services seemed to be focussed on only rationing investigations for only the critically ill for as long as possible due to the multitude of uncertainties of access to services, unknown demand, and safety of society at large.

There is a bigger issue here, as to how well we as a nation and society were prepared for the pandemic, and unfortunately now we’re all in it together. The resultant psychological, emotional and financial impacts on delay to recovery for the individual however may not have been given adequate importance at the time, and now months down the line affects health as well as economic wellbeing.

I strongly believe however that the medical professional at large have done the best job they could have done with the resources available, and individuals offer the best version of themselves to their patients – as their lives too are frought with uncertainty and inconsistent form due to external negative COVID related stressful stimuli from outside the consultation room.

During the early stages of the outbreak, the public health message was that the majority of people infected would suffer with a mild self limiting pattern of illness, not too dissimilar to other winter viral infections. Wuhaan was a long way away from our world, and unless you were in contact with travellers from affected areas in the far East, our risk of severe illness in the UK was perceived to be very low. However in the workplace, we quickly adopted PHE advice and screened every person coming onto our site for foreign travel and cardinal symptoms of cough or fever.

In February, Italy was added to the risk of affected countries, and reports of devastation and frightening messages from doctors working in intensive care units in Lombardy and surrounding provinces, warning us to brace filled social media circles and filtered into our psyche.

The media started to push the message of rising cases on our doorsteps got out and as a nation we were slow to respond. Time was wasted in the initial weeks, PPE basic and slow to be acquired and distributed, mass gatherings continued, pubs and restaurants remained open and there was little foresight from the impact on other countries who were following very different measures. Ireland had cancelled St Patrick’s day, Austria was in lockdown, but the news was someone else’s and we continued to play football with Europe and bet on horses.

We were reassured by the government’s health advisors that we had the best brains in the world looking at the numbers. Predictably, the statistics started to show an upward trajectory in cases and the peak was expected. The testing and resultant data collection we were promised as a game changer, was fraught with logistical challenges, as well as concerns about reliability, and poor sensitivity. The European league table of deaths was not looking good, and we closing in on the top.

The public fear was slowly increasing yet the message from our leaders took time to change, the daily briefings came, and we were once again told they had it under control. Meanwhile even more countries in mainland Europe had entered lockdown, yet our main public health message was to continue washing hands for 20 seconds, and this would keep us safe. This did little to raise the profile of the dangers of the infection. Then Boris was floored and the perception changed. It was apparently touch and go. When he came out of hospital, the nation breathed a sigh of relief, and with it came a realisation that this was not just a condition that affected the elderly and frail.

I acquired the infection around a similar time, early on in March. I am fit and exercise regularly and have the stamina to work long hours in a demanding job. My mild symptoms of dry cough forced me to self isolate and work from home, I was not worried. But then I started noticing shortness of breath and persistent tachycardia with rates up to 150 on doing very little. After 3 weeks I too had to stop working, I was short of breath on very little exertion, especially whilst speaking which I would normally do for hours on end as part of my job. I was now worried. I felt tired physically and emotionally. Many sufferers on groups also speak of the brain fog I experienced, a slowing down of decision making and cognitive reasoning. A fundamental skill for doctors to think outside the box. This was not normal.

I’ve unfortunately suffered prolonged effects of the disease described by many. The unrelenting vague, non-specific symptoms, where many people report symptoms affecting various organ systems in the body several weeks after the onset. The mechanism is still unknown, but theories widespread about ongoing chronic infectivity, auto-immune, micro-vascular clots, or autonomic nervous system dysfunction causing unexplained effects on the body. None of which are well defined, or simple for clinicians yet alone patients to understand and evaluate. Nor is there a simple and reliable test for the Virus or it’s complications yet.

As a clinician I’m also very aware of the confounding affect of Covid on our clinical reasoning, and I fear for my patients who may have been developing symptoms of a disease, whilst incidentally contracting coronavirus around the same time. The risk of missing dual pathology and attaching oneself to a diagnosis of a post covid syndrome must be given careful thought.

I went through a process of rationing my symptoms. Or was I just being paranoid, and would they just go away if I ignored them? Many clinicians speak of a “spidey sense” or instinct, when things are not right and mine started to fire. I had basic medical equipment at my disposal, and found myself obsessively checking my cardio respiratory parameters for reassurance and hope for improvements.

I was well past the alleged 2 week mark when this started happening, so according to the anecdotes we were receiving I should have been improving. This was strange. I stubbornly succumbed to family members who encouraged me to seek an assessment. I sought opinions from medical professionals by telephone on several occasions over the next few days. Those who had triaged my symptoms were time strained due to sheer volumes of calls, and hence their decision making focus unsurprisingly appeared narrow as they too were learning, with the emphasis on you either go into hospital if you really can not breathe, or you stay at home and sit it out. There was no in between, and little help on offer otherwise. This may have been influenced by the very powerful government message at the time, advising people to “stay at home, and not to overwhelm the NHS.” There was a reluctance amongst many patients too to avoid going to hospital, and my contacts with primary care doctors seemed to reinforce this.

The first task in the clinician’s mind is to ensure there is no acute emergency. This poses a greater challenge when you can not see the patient in front of you, and need to listen carefully to tone and volume of speech, and the way they are breathing whilst on the phone. Sometimes being able to provide parameters to doctors can be useful, but also can falsely reassure them and create a cognitive bias, especially if they are untuned to the variable presentations of acute COVID, and that normal numbers do not necessarily mean the patient is ok.

This safety check process is vital each time they consult, although patients may not recognise it’s value. For doctors this is mentally effortful and time consuming. So as I found on more than one occasion, once a decision was made that I sounded ok and did not requiring immediate hospital assessment, I could hear a sigh of relief from the clinician I was speaking to. The job was done and there was little interest at the time in listening to the story or further explore distressing symptoms.

I had sought empathy and somebody to validate my uncertainty and come up with a plan. But time was limited in allocated consultations, and general health anxiety increasing both in society and amongst health professionals alike. Furthermore as access to the usual standards of care and investigations were harder to access, doctors too may have felt unequipped to alley fear in ways they normally would have been able to.

COVID is a novel disease, and patients may initially accept reassurance and use of time if offered with shared understanding, a safety net for returning or a follow up; but as late sequalae of the disease are being noted one needs to be open to the changing perspective of the patient, especially as we have so much to learn about the presentation. I have feared that clinicians I should normally be able to trust were flirting with risk they shouldn’t be taking with my health.

“If you don’t look you won’t find” holds even more true as the normal sensory information and the subtleties of human interaction are greatly reduced through non face to face encounters, opening up a greater blind spot and increasing the chance of diagnostic error. This may be easily manageable if you’re treating a factual or numerical result, but when we’re dealing with holistic care of human beings we need to be doing better to cover up the deficiencies we face when the patient is not in our rooms. Therefore listening carefully with empathy and kindness, as the impact of COVID goes beyond those who immediately recover or those who unfortunately die, but long haulers, families and communities.

Eventually, my symptoms showed no evidence of rebate, and my uncertainty grew. I was left with no other option but to reluctantly attend hospital at week 4. I remember the moment well. Packing an overnight bag, feeling short of breath. Kissing my children who were too busy playing and embracing my wife before taking the solo journey to A&E, as there were restrictions on who was allowed in the hospital. The media was full of stories of patients in isolation and lonely, unable to access family support as they deteriorated due to efforts to contain the virus. I was frightened.

I was not looking for a magic pill, or hope of a cure as I knew this was a virus. But simply to be taken seriously and evaluated, and for somebody to help understand what was happening to me. I eventually consulted a clinician whom I trusted, I spoke openly about my vulnerability, not wishing to self diagnose yet outlined my concerns about complications which were in the back of my mind from reports in the medical literature I had read and sought tests to objectively exclude my fears.

She did not tell me to just give it time and it will get better, she admitted she did not know. Her evidence base was largely anecdotal and based on the patients she had treated and seen rather than validated research. She made sensitive enquiry into the impact of the illness into my wellbeing, rather than the rigid formulaeic questioning which I had previously experienced. Furthermore she did what she knew best, and listened with kindness, and shared her own uncertainty and evaluated my symptoms on merit, then offered sensible investigation into possible differentials, whilst raining in clinical concern and anxiety. She then offered me the crucial opportunity to ask more questions, and was not afraid of now knowing all the answers. I appreciated her logic as well as her humility, but most of all recognised her helplessness; as I too may have struggled for answers to the same questions had I been fit enough to consult my own patients.

More than anything, it reassured me that I was not just a statistic or another patient with corona-anxiety in her eyes. It validated something I had always done as part of my practice, aiming to address the patient’s concern which I now believe can be equally as powerful a healer of distress as dealing with the actual symptom. More importantly it gave me faith in my colleagues and the profession again. It’s amazing how as patients we may judge the system by the encounters we have with individuals.

I recently crossed the 100 day mark, and a cycle of recurring of new symptoms of cardio-respiratory symptoms of uncertain cause, neck discomfort and vocal fatigue have all compelled me to seeking assurance. The suffering has been added to by the issues of accessing care and having to plead to justify tests have repeated itself on more than one occasion during this pandemic. It has been exhausting and like many other sufferers have documented on online long haul forums, each time has been a struggle. There is still too much unknown, and as a patient it has been a stressful situation having to wait for months for tests which have delayed therapy and recovery. This process would be much easier for clinicians and patients alike if we knew what to expect with the natural history of the disease.

I have since reflected, that as a doctor I too have felt challenged to practice in an alien environment with limited access to resources. No doubt professional consciences of medics world wide would be hurting too at not being able to do the best job possible. But I do believe that we only improve as professionals by considering whether more can and should be done, by effective listening and not casting judgement. These are generic skills and attitudes we should all possess regardless of the setting of the consultation. We need to emphasise this now more than ever as the numbers of new cases are on the decline, and as the hidden pandemic of long haulers like myself with unheard symptoms seek help, we need to make each patient contact count. If indeed, investigations are genuinely felt to be unwarranted, we need to be able to develop and use other tools within the consultation to help our patients navigate the uncertainties with kindness. The mantra of treating the patient holistically and not the test or result is even more true, and forms the cornerstone of General Practice.

In primary care we have always dealt with the probability and incidence of a particular disease, which has determined our tolerance to use of time. Often this is shared with the patient, and if the reasoning is valid, more often than not will be accepted. However with a novel zoonotic virus with an unknown trajectory we need to be careful about making assumptions about the sequalae of what happens next. Yes we have knowledge of normal and abnormal human physiology and the aetiologies of documented diseases as a benchmark, however I’m not sure that any of us truly understand the phenomena that have resulted yet. So therefore I think we need to be able have an open conversation with patients. Again this is much easier to be communicated face to face. But if we can exclude the other serious and probable disease pathologies that we have great experience in managing, we may be able to provide our patients with some comfort.

For many patients, this reassurance and exclusion of possible complications had been a slower drawn out process and has perpetuated health related worry regarding their symptoms. Even for a doctor-patient like myself with knowledge of the healthcare system, help has not been easy to come by, and not all clinicians I have had contact with have had the expertise to manage the complex dynamics caused by the pandemic with confidence.

We must remind ourselves that symptoms are more than just the physical ailments. There is often significant psychological and emotional stressors that tie into the patient’s perception of their illness and this will directly influence recovery. For me the biggest fear is will I return to my pre-covid state of normal life and function. And once again, only if we truly listen to our patients, and pick up on the cues that could indicate suffering, will we be able to recognise the deeper distress caused by the physical symptoms.

A non-evidence based explanation maybe all we can offer at present, and our communication skills are more valuable then ever at this point in time as patients have always expected more from us.

Conceptually, as a doctor and a patient trying to define long haul covid, and others may offer alternative descriptions which resonate with their own experiences. I would say this is a post viral reaction of unknown aetiology, be it inflammatory, vascular, autonomic or otherwise, which puts the body and mind under considerable stress. Access to tests to exclude possible known disease patterns may be warranted, as this helps both parties in managing the fear of the unknown. Followed by national provision of funding to recognise the need for ongoing support for rehabilitation to help people like myself to return to normal functioning.

Unfortunately GPs really can not be the sole provider of this, and is unreasonable and overburdening on a stretched workforce to expect this. A structured approach to supporting patients with pacing and holistic recharging of their batteries needs to take place. A 10 minute remote GP consultation can really not be the answer here, as I have realised to expect this is painful from both sides of the fence.

Luckily I have fora, friends and colleagues where I could gain sensible perspective but for many who do not have this outlet, the suffering may be greater.

I above all recognise that we’re all in this together as doctors and patients, and must seek the opportunity to be kind, to restore and heal.