Long COVID made me retreat from the world, entering into the realm of invisible illnesses where sufferers are ignored, dismissed and struggle to find the help they need.
I've been living in what I describe as soup, a cloudy, opaque soup, for nearly a year.
For months I couldn't read. Debilitating fatigue crushed me. Each morning I'd wake up heavy, my face pale and puffy and my head full of concrete.
It's more than just tiredness, the fatigue weighs over you like a heavy blanket, unable to move your limbs from under it.
When I got COVID-19 in January, I was laid flat for a couple of weeks but aside from the fatigue my symptoms were relatively "mild".
I thought, like those around me, that I would get back to normal soon. I was wrong.
I had joined the growing cohort of long COVID sufferers and the many people before them with chronic and complex autoimmune and post-infection illnesses.
As I searched for answers I discovered a medical system woefully inadequate for conditions like mine. I'm slowly making my way back to a new normal, not quite healthy but able to live.
But for those without sick leave, money, the ability to advocate for themselves and a fair amount of luck, the chances of recovery are much lower.
And while long COVID and other similar conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are often described as a "mystery", the truth is they have a history of being ignored and dismissed by medicine.
When normal doesn't return
Before catching COVID I was fit and healthy, my weekends were spent rock climbing or running, I took my health for granted.
My first day back at work out filming a story, I was a mess. I remember driving home in tears from exhaustion.
When I tried to go for a run a few weeks later, my heart rate spiked to unusually high levels, my legs barely leaving the ground, I didn't get far. The next day I was unable to get out of bed.
I later learnt this had a name, post-exertional malaise or post-exertional symptom exacerbation, also a hallmark of ME/CFS.
It took a while to realise this was what was happening to me. But I've had injuries before, how bad could it possibly be, I thought.
I was wrong. Having long COVID is nothing like a hip reconstruction. Broken bones heal in a linear time frame. There are visible signs of damage, scars, X-rays, crutches and recognition.
But "invisible illnesses" don't get the same acknowledgement or understanding, by society or by the medical profession and they don't heal in a linear way.
As the weeks wore on I became worse. The walk from my car to my desk left me exhausted.
Eventually I took what I thought would be two weeks off, some time to rest and recover.
It turned into five months and I'm still a fraction of the person I was.
My immune and nervous systems were rebelling against me and eventually I discovered I had a condition called dysautonomia or autonomic dysfunction.
The autonomic nervous system regulates heart rate, blood pressure, breathing and digestion but when it's thrown out of whack it can lead to a long laundry list of symptoms including increased heart rate, breathlessness, digestive problems, allergic reactions, exercise intolerance, visual disturbances as well as fatigue and brain fog.
Dr David Putrino, the director of rehabilitation innovation at Mount Sinai Hospital in New York, says the autonomic nervous system is brilliantly interconnected and directs the body to carry out these functions.
"Things like viruses and inflammation, and big trauma hits to our body, can knock the autonomic nervous system out of balance," he says.
"Around 70 per cent of people with long COVID present with signs and symptoms that are consistent with dysautonomia and what that means is that we can often objectively measure some of the things that are misfiring in their autonomic nervous system to bring about this diagnosis."
Putrino says he's frustrated when people say there's no objective functional tests for long COVID, with the signs and symptoms of dysautonomia easy to pick up, if you know what you're looking for.
"There's not a lot of awareness of things like dysautonomia … we've started to suffer from an over reliance on what can be seen with a very narrow scope of testing."
"I wish I could say something other than it feels a lot like intellectual laziness. But, this is where we are. And I think that we need a bit of a wake-up call across the board."
'We couldn't say you have this illness'
Putrino has spent the best part of the past three years treating and researching long COVID. When the virus first hit New York early in 2020, the Australian expat quickly swung into action.
An app his team had developed to monitor stroke patients after they left hospital was quickly re-purposed to monitor patients with COVID-19. It launched in early March 2020 and within days thousands of people had signed up.
For the most part, people stayed on the app for about three weeks but around 10-15 per cent weren't getting better.
"We'd hit four weeks, five weeks, six weeks, and their symptoms started to morph, they started to go away from fever and vomiting and a cough and feeling like lungs are congested and they started to move toward extreme fatigue and cognitive impairment.
"We started calling it post acute COVID syndrome, because it was no longer acute COVID but we weren't ready to say it was post COVID.
"We didn't really have a firm diagnostic biomarker, we couldn't run a blood test and say you have this illness, but it was an illness."
Putrino's team quickly recognised the prevalence of the collection of symptoms associated with autonomic dysfunction, having seen it in the clinic through their concussion patients.
Up to 500,000 Australians affected
The term long COVID was coined by patients themselves, who early on in the pandemic took to social media in droves, describing the ongoing symptoms and debilitating fatigue.
It's since been recognised by national and international medical institutions, including the World Health Organisation (WHO) which estimates about 10-20 per cent of people experience a variety of mid and long-term effects after recovering from their initial illness.
But numbers aren't being tracked, making it difficult to know just how prevalent it is.
In Australia, modelling estimates that up to 500,000 people could be experiencing long COVID, with more than 20 per cent of those cases suffering "significant impacts".
David Putrino emphasises that long COVID is an umbrella term that includes at least two different sub-groups: people who had an acute infection and develop chronic health problems like lung or heart damage, and those who may have had a milder case but went on to develop severe post-viral symptoms.
"It's probably 10-to-15 separate conditions all being lumped into this one name, because we're still trying to work out everything that's going on," he says.
For those with the post-viral long COVID syndrome, most conventional medical tests come back as normal but Putrino, along with a collaboration of international researchers, has been searching for biomarkers that could identify people with long COVID and eventually find treatments that address the root cause of the disease.
"There's no one single biomarker that completely identifies people as having long COVID or not having long COVID but we're getting closer and closer to that."
There are three major working theories about what could be behind long COVID; microclots in the blood, viral persistence and autoimmune disease. It may be that all three play some role.
In the meantime, for the majority of patients who have autonomic nervous system dysfunction, understanding the condition and learning how to manage it can make a world of difference. And despite what most doctors say, there are some treatment options.
Sympathetic looks with no treatment
One kind of dysautonomia, common in long COVID, is a condition called POTS, postural orthostatic tachycardia syndrome, which means when you stand up your heart rate increases by more than it should and being upright also exacerbates other symptoms.
It can be easily diagnosed in most people by doing what's called a 10-minute stand test, with the clinical criteria of a standing heart rate that's more than 30 beats per minute higher than resting.
When I first heard about the condition I immediately recognised it.
I went back to my GP armed with my new knowledge, only to be disappointed.
He told me it was difficult to get a diagnosis, looked at me somewhat sympathetically, shrugged his shoulders and that was that.
No referral, no advice, no medication.
In September, after a six-month wait, I finally got an appointment at a long COVID clinic.
Again a look of sympathy and a shrug of the shoulders that I was becoming all too familiar with. I'll see you again in six months.
There was no mention of the words POTS or dysautonomia in the clinic, or the many strategies and medications that can be used to manage it. I was given some strength and breathing exercises by the exercise physiologist and physiotherapist and that was it.
This is a common story. Waiting lists for long COVID clinics, if they exist at all, are now up to a year long. The resources being put into them don't match the demand and when you get there they often disappoint.
People with long COVID continue to go to online support groups for help, because there's nowhere else to turn.
Most of my understanding of long COVID and dysautonomia has come from my own research, stuck at home trawling the internet for tiny droplets of hope.
And while there is some good information out there, finding it is by no means easy.
Post-infection syndromes aren't new
While long COVID is finally putting the spotlight on post-viral conditions, there are many who argue it's not actually a new condition but rather a grossly under-recognised one.
ME/CFS advocacy group Emerge Australia wrote in a submission to the federal parliamentary inquiry into long COVID that post-infection syndromes are documented throughout history and have often been given their own names.
"The symptoms of these diseases in their acute phase, and the organ damage they cause, can be very different. However, the lingering disease following each infection appears to be quite similar, both in symptomatology and underlying biology … But, due to the neglect for post-infection disease, long COVID patients are facing the same issues as people with ME/CFS."
It's a point of frustration for Marie-Claire Seeley, a clinical nurse and researcher who works in Australia's only dedicated dysautonomia clinic in Adelaide.
"Why the hell are we in this situation when people have been hammering for years about it? It really originates back to that psychosomatic tag that was attached to post-viral illnesses," she says.
"We're banging on doors and it's just deaf ears because it's so entrenched in the medical system that this is psychosomatic."
The stigma towards post-infection illnesses has been ingrained in medical literature since the 1950s, with high-profile journals publishing papers deeming them to be psychosomatic, or caused by "epidemic hysteria".
Seeley says their evidence for that was that the majority of patients were women.
We now know that autoimmune diseases disproportionately affect women.
It's not theoretical for Seeley, who has faced discrimination as a patient and has witnessed it throughout her career.
When she was 24 she had a virus that left her with a myriad of long-lasting symptoms, including fatigue, brain fog, vision problems and high heart rate on standing that she later learnt was POTS.
She was dismissed by two male GPs who put it down to anxiety, but she pushed to see a cardiologist.
"The cardiologist put on Holter monitors and saw my heart rates went from kind of 50 up to 200 at one spike and it was all associated with my dizziness and inability to stand. And he just turned around and gave my husband a lecture about the fact that he was married to an anxious young bride … I was just absolutely gobsmacked."
That experience scarred Seeley, who decided never to talk to a doctor about it again.
"I was more adamant that I'd never give anybody the opportunity to make that accusation against me.
"Then I eventually went and did my nursing and by then there was some stuff in the literature about POTS and I recognised it as soon as I saw it."
It would take much longer before she would be drawn into the treatment and research of conditions like hers.
"I was aware from the other side, by this time, what the medical society's view was. I worked in emergency departments and I would frequently hear the same accusations and stories, someone would come in with this new onset of fatigue and brain fog and inability to kind of stand and the same story," she says.
"The doctors would never tell them face to face, they just kind of brushed them off. But in the back corridors they're talking about 'oh one of those patients'…and all the usual derogatory things they say."
But three years ago she met Adelaide cardiologist Dr Dennis Lau, one of the few specialists in the area.
"He contacted me afterwards and said, why don't you use what you know and your research skills and your clinical skills to help people. And that's basically where we got to, I did a full U-turn and got involved in the research.
Together Dr Dennis Lau and Seeley run the country's only POTS/dysautonomia clinic and have founded the Australian POTS foundation, a research and advocacy group.
Lau says because the autonomic nervous system isn't properly taught in medical school, many people with dysautonomia are misdiagnosed or neglected, often they're told nothing is wrong with them.
"I've been there, done that," he admits.
"Often there will be someone breaking down in the consulting rooms, because finally somebody's given them a diagnosis, telling them that they are not mad and telling them that it's real. And that is happening day in, day out.
"It is rewarding to see a lot of lives changed, people return to work. But again, there are also many tough ones and we are still trying our best to help them."
The exercise catch-22
The subject of using exercise to treat post-infection syndromes is highly controversial.
For years ME/CFS patients were prescribed graded exercise therapy, a form of physical therapy where activity is gradually increased over time, regardless of how the patient is feeling or if it increases symptoms. It's often used alongside cognitive behavioural therapy on the assumption that their activity avoidance came from fear.
The treatment has been widely criticised by patients, doctors and academics who say it actively harms people.
It continues to be used in Australia, despite strong opposition and is still included in some health guidelines, but in the US and UK it's been removed as a recommended therapy.
Exercise with this condition is a real catch-22: a tiny amount can send you into a downward spiral depending how bad your exercise intolerance is, but not moving can also cause a feedback loop that worsens symptoms over time.
At David Putrino's clinic in New York, he says the most important thing for patients to learn is pacing.
"No pain, no gain is not the way to do well with this illness, it will in fact, exacerbate your problems and make you worse."
"On the psychological treatment side of things, you know, I think we just need to throw out the idea that you can think yourself out of long COVID and other post viral conditions, that is a useless idea."
More questions than answers
The federal parliamentary inquiry into long COVID has received nearly 500 submissions, both from individual patients, advocacy groups and institutions, with hearings expected next year.
Dr Monique Ryan, the independent MP for Kooyong and former director of the neurology department at the Royal Children's Hospital in Melbourne, is sitting on the inquiry. She's concerned about the lack of data on long COVID and the potential long term implications on the health system and the economy.
"It's really important to track the data, as a doctor and a scientist I'm very data driven, and it's concerning that we haven't really been prospectively capturing data," she says.
"It's a pretty significant illness… many of them are unable to return to the workforce, either in any full-time or part-time capacity. So the potential implications for that long term for us, for our economy, are really quite concerning."
She says the inquiry is likely to return with more questions than answers.
"We can say that we know that it's more common than people appreciate. We don't know how best to treat it and this is what we need to do to understand that and to address that."
Ryan admits that POTS and dysautonomia are poorly understood areas of medicine.
"Most GPs wouldn't be familiar with it, wouldn't know how to treat it… But unfortunately, I think it's much more common now than it probably has been at any point in the last 30 or 40 years at least because of COVID."
On access to drugs and treatments, she says the system needs to be more adaptable for new patient groups like long COVID.
"I don't feel comfortable saying GPs should be able to prescribe all of these things willy nilly, if there's no monitoring of that, or follow up on either the effectiveness of it or the safety of it. I think that what we do need is a government that's more agile and more responsive to things like this coming up."
Knowledge is power
There's no magic bullet to treating dysautonomia and the broad array of symptoms that come with it. But Marie-Claire Seeley believes arming patients with understanding and knowledge of the autonomic nervous system is the most powerful thing medical professionals can do.
"Empowering people to understand the likely process of their disease state cannot be overvalued. It is so important for people to have a handle on what this condition is because it answers the why to almost every problem that they have," she says.
That was certainly the case for me: understanding how to manage my symptoms has been invaluable. For POTS that means drinking extreme amounts of electrolytes and salt to help increase my blood volume; wearing compression tights to improve circulation; learning to breathe and meditate to calm my nervous system and bring down my heart rate; and wearing a heart rate monitor 24/7 to help me pace and understand what activities are draining me. For example, cooking while standing or sitting at a desk can still send my heart rate flying and back to bed the next day.
I've also had the good fortune to find specialists who listened to me and were willing to prescribe medications that lower my heart rate and help with fatigue and brain fog, which without a doubt have helped me to regain some of my function.
But finding doctors who understand how to prescribe medications and are willing to do so is difficult — and on top of that they're expensive because they're not listed on the Pharmaceutical Benefits Scheme (PBS).
"None of the tablets that we use are known to directly impact on the autonomic nervous system, right," Lau says.
"So we often treat the symptoms, rather than treat the disease, but by treating the symptoms we allow people to engage in rehab, in exercising to further improve their condition."
Medical gaslighting lingers
It's clear from many of the submissions sent to the inquiry there's a long way to go, with the waft of medical gaslighting tainting many of the pages.
One example that stood out was from Queensland Health, which states:
"In addition, there are indications that a framing around 'recovery' rather than 'long COVID' enhances patients' expectations of lower symptom severity and duration, and increases their sense of control over their health. It also reduces any potential for a nocebo effect."
Nocebo — essentially the opposite of placebo — means an expectation of a negative outcome that could lead to worsening symptoms. It appears Queensland Health is falling back to the tradition of saying post-viral illnesses are a psychological concern, that it's all in your head.
It's not only wrong but deeply hurtful and ostracising for the people whose lives have been up-ended by this disease. Acknowledgement and understanding can go a long way in helping patients feel respected.
But there are also dozens of submissions with practical recommendations, including better tracking of the data, clear definitions of the illness, educational resources for both medical practitioners and the public, national health guidelines and more funding for medical resources and research.
For those suffering from similar post-infection diseases and the small group of researchers and advocates involved, long COVID has provided a glimmer of hope that the sheer volume of people suffering will finally bring the attention needed to these life-altering illnesses.
But after decades being dismissed and ignored Marie-Claire Seeley isn't holding her breath.
"I have a real concern that it will be defined as a COVID syndrome. And it's not, it's a disease that is shared by thousands of other people around Australia. We have so many patients who have never left a bedroom for years on end and it's just terrifying to me that that's going to continue past this one opportunity that we have to bring attention to it."
Tracking the once untrackable
Dr Dennis Lau believes dysautonomia is much more prevalent than we know. He hopes the sheer number of people with long COVID will change that.
"Patients are now getting online and helping themselves, they will look at what is wrong, they actually look at the latest research and then want something done for themselves.
"There are lots of smart people out there who refuse to take that there's nothing wrong with them and they have to do their own research. And I think this is an amazing story to tell and to make people understand how the health system and the many doctors have failed our patients to get the diagnosis and the right treatment."
The Australian POTS Foundation has recommended to the parliamentary inquiry the introduction of a code that can be tracked through the healthcare system. They also recommended dedicated autonomic testing facilities be established in major hospitals to provide multidisciplinary care for long COVID and similar illness.
Right now access to help is grossly disproportionate and discriminatory, finding it requires money, knowledge and persistence.
"Who can afford the care in terms of seeing multiple specialists not get the answer and keep going with that. If you don't have the resources, you will never find answers," Dr Lau says.
Marie-Claire Seeley says it's a daily struggle for her team.
"It's heartbreaking for us… if we had more time, we would do more about it but it's just so wrong. This is not a condition of the middle class in Australia, it's a condition that everybody is just as likely to get and at the moment there is no access to help."
Long road to recovery
Back at Mount Sinai in New York David Putrino laments the "culture of suspicion" drilled into young clinicians, and the affect it's had on patients.
"I don't think I've really ever met a single person who wanted to be sick, or was trying to pull a fast one," he says.
"We're told in our clinical training so often that people just want to be sick, that we've got to look out for all of these 'yellow flags' as they're called, that the illness could be psychological as opposed to physical…I was young and impressionable when I was learning these things, but now that I have clinical experience and I look back on that, I'm like, are you kidding me?"
If not for the internet I may never have found my way to the knowledge and people I needed to slowly creep out of the dark hole I had found myself in.
I'm back working part-time from home, I can do a small amount of low intensity exercise and I feel hopeful that one day I will get back to a semblance of my former self.
Recovery is a subjective term, I often hear health services say "everyone recovers from long COVID", but there is absolutely no data to back this up. I'm sure many do, but others simply stop going to the doctor because it seems pointless. They drop out of the health system and society.
For others like myself, we recover to a certain extent, enough to live our lives, but are by no means cured.
I have to carefully manage and plan my activities so I don't fall apart, that means I still rarely leave the house, I limit my social interactions because they are too draining and I schedule multiple rests throughout the day.
The good days now outweigh the bad, the colour and clarity is returning and I'm slowly re-immersing myself into the world. I just hope others can do the same.
Credits
Words: Jess Davis
Photographs: Maren Preuss, Brant Cummins, Nicholas Haggarty
Production and editing: Leigh Tonkin
