- Lived experiences of long COVID
4.1The Committee recognises that long COVID itself is the problem: the emergence of this new condition, and our limited understanding of it, has meant that both patients and health care professionals alike have faced an extremely difficult situation and suffered from a lack of information.
4.2The Committee recognises that for those affected, long COVID has impacted many aspects of life. While appreciating that each experience of long COVID is unique, this chapter summarises and highlights common themes of the lived experience of long COVID that the Committee heard throughout the inquiry.
4.3This chapter discusses:
- The experience of seeking medical help and specialised care for ongoing symptoms after COVID-19 infection
- Impacts on people’s employment and income
- Impacts on social activities and daily activities, including roles within the household.
- In discussing these themes, many individuals who made submissions told the Committee about how long COVID has also impacted their mental health and wellbeing.
- This chapter reflects the experiences of people with long COVID, rather than discussing long COVID from a clinical perspective. Definitions of long COVID, its prevalence, symptoms, risk factors and prognosis are discussed in Chapter 3. The perspectives of health practitioners interacting with people with long COVID are in Chapter 6.
- Throughout this chapter, the identities of many individuals who made submissions are not shown as those individuals requested their name be withheld from publication. Given the highly personal nature of many submissions, the Committee was careful to protect individuals’ privacy during the inquiry.
Living with long COVID
4.7The Committee received an outpouring of evidence from people living with long COVID. Despite this, the Committee heard multiple times that more individuals with long COVID would have liked to make a submission or contribute to the inquiry but were unable to do so due to the severity of their symptoms.
4.8Although some estimates were mentioned, the number of Australians living with long COVID remains uncertain. The prevalence of long COVID is discussed further in Chapter 2.
4.9Professor Paul Kelly, Chief Medical Officer of the Australian Government Department of Health and Aged Care emphasised the importance of hearing and understanding the experience of people with long COVID. He said to the Committee:
What we don’t generally have, and you absolutely have… is the really important component of capturing and analysing the shared experience, the lived experience of long COVID. From my perspective, what we want to hear from the committee is a summary of the things that you’re hearing, as you’ve heard from your witnesses.
Box 4.1 What do people with long COVID tend to experience?
While acknowledging that each person’s lived experience is unique, the long COVID experience may include some or all of the following:
- Quality of life being impaired (or lost) due to symptoms that include fatigue, headaches, brain fog, low energy levels, and interrupted sleep, diet and exercise
- Bereavement for lives lost or multiple futures lost
- Lost earnings, impacts on household finances, and, in some cases, an inability to work or to extend care to family members including children
- Reduced immunity levels and a sense of vulnerability
- An inability to engage in social activities and sports
- Negative feelings, anxiousness and declining mental health
- Frustration with the lack of answers or consistent advice from healthcare professionals (or cures) that could return the person with long COVID back to better health
- Disillusionment with Australia’s health care system.
4.10Several organisations and groups provided submissions reflecting on the collective experiences of their members with long COVID.
4.11A submission from the Brimbank Community-led Long COVID Support Group told the Committee that ‘everything changes’ when a person develops long COVID:
Concentration and focus, memory, stamina, cohesion, general cognitive function are all impaired. There is no certainty as to whether the issue will subside… Everyone suggest [sic] solutions to try and help (from medication, to alternative therapies, to general health and well-being, meditation etc.) but lack of definitive medical certainty is the most stressful factor, added [sic] the multitude of information on the internet, and the lack of brain function to decipher the information that is available.
4.12The Committee also heard from representatives of the Australia Long COVID Community Facebook Support Group, which had over 3000 members as of November 2022. Ms Karren Hill, an administrator of the group, expressed concern about the prevalence of long COVID in the community and said:
Estimates suggest that in Australia hundreds of thousands of people already have long COVID, and the last wave and the one expected next month are likely to add several hundred thousand more. For many it is a serious, life-changing condition. Our challenges in terms of our health, job, careers, incomes and relationships and our future health outcomes are entirely unknown. … The scale of its impact in Australia is not always fully recognised. Many of our members are feeling neglected or forgotten. … This lack of strong data makes it difficult to develop appropriate policy responses and easily dismiss the serious, urgent widespread need.
4.13The Consumers Health Forum of Australia, an advocacy group on consumer health care issues, reported that consumers were concerned about the long-term economic and social effects of long COVID:
…long COVID will have many ongoing effects for the economy, the health system, government payments and supports, and the whole community. Many people are taking long term sick leave or losing their jobs, returning to part time or lower skilled work, or face permanent disability. Those affected by long COVID will have to rely on government payments and health services, will need more paid and unpaid care, and will be unable to fully meet their own responsibilities to provide care for their children and/or others.
4.14The Committee heard that for a variety of reasons, ‘many are reluctant to seek help.’
4.15The Australian Psychological Society’s observations of patients attending the long COVID clinic at the Royal Melbourne Hospital identified that common themes included:
- Patients not being believed by peers, family and work colleagues about the impact of their long COVID symptoms and concerned that their experience may be considered ‘malingering’ by health professionals and/or others – a concept known as testimonial injustice.
- Feeling uncertain about the timelines for a likely resolution of their symptoms and the disruption to their life trajectory or identity
- Feeling worried about keeping up with their previous work standards and being seen as incapable at work due to the fatigue, cognitive and psychological symptoms they are experiencing
- Difficulty advocating for themselves. Many report that their problem-solving skills have been impacted, and with increased anxiety levels it has been hard for them to ‘navigate the system’ to get assistance and try to make sense of their symptoms alone.
- Another submitter articulated many of these challenges in their submission, including encountering disbelieving health practitioners. They highlighted how challenging they have found it navigating the healthcare system while unwell, despite relevant experience as a social worker:
Some will act very dismissive. My GP, who knew me for years, rolled their eyes at me, I'm almost certain, and was very dismissive, even though she knew me as a busy mum living a very full and active life and feeling pretty debilitated.…I spent a lot of time trying to navigate a system that was super hard normally, but, being as sick as I was… I've got a little bit of understanding of how to do that, and it was still really hard.
4.17The Australian Federation of Disability Organisations noted that ‘Both the COVID-19 pandemic and Long COVID have disproportionately affected vulnerable and marginalised populations, including people with disability.’ They also expressed concern that those who become disabled by long COVID have difficulty accessing mainstream disability supports:
Long COVID can be incredibly disabling, leaving individuals unable to work or complete the basic activities of daily life. In order to access the DSP [Disability Support Pension] or NDIS [National Disability Insurance Scheme], individuals living with Long COVID must prove that they fit the detailed and stringent criteria of each – a nearly impossible task.
4.18Clinicians at the Long COVID Clinic at St Vincent’s Hospital in Sydney described how appropriate treatment and recognition can improve the patient experience:
A number of patients are significantly frustrated by the length of time it takes to make a diagnosis and to achieve a clinical appointment. During the clinical appointment they experience a sense of validation and are often overwhelmed by the recognition that their level of functional loss maybe [sic] caused by symptoms consistent with long Covid. They will then often have medications or tests prescribed and will often commence a tailored activity or movement program as well as see the psychologist face-to-face for education on pacing skills. For patients who live out of area, they will be reassured and referred back to their GP [general practitioner] with a comprehensive letter or referred to a rehabilitation, or pulmonary rehabilitation service in their area.
4.19These themes are discussed in more detail in the next section.
Seeking medical help and specialised care
4.20The Committee received evidence from individuals about the steps they followed when they realised they were not recovering from their COVID-19 infection as expected, and what happened when they sought medical treatment.
4.21Many people told the Committee about their experience reporting their ongoing symptoms after a COVID-19 infection to their general practitioner (GP). For example, the submission from the Consumers Health Forum of Australia noted the following common issues:
Issues patients faced included that their regular GP:
- did not accept long COVID as a condition
- did not accept that the symptoms they had were consistent with long COVID
- using outdated clinical guidelines to recommend inappropriate treatment
- being concerned that they did not have the experience or [sic] expertise to treat the condition.
- Submissions described the length of time taken to receive specialised care after a GP identified long COVID as a possible diagnosis. Many submitters commented that the cost of these services were an additional challenge. For example, Rowena Findlay submitted:
I saw my GP at 3 weeks, he kept reassuring me that because I'd had the 4 vaccinations, the chance of me developing long covid was low. By 6 weeks he wrote me a sick certificate so I could continue to work reduced hours. By 8 weeks we talked about the long covid clinics. He said I had to wait until 3 months before I could apply and that there would probably be a long wait. He suggested going to see an exercise physician privately, which cost about $100 per 1/2hr session. I wondered what those who couldn't afford it would do. While sessions were good to get me physically moving again, they admit themselves that they don't know a lot about long covid as they are learning along the way like the rest of us. I was completely frustrated by this time.
4.23Another individual with long COVID shared a similar experience:
I have not been able to work for 7 months now. Physical fatigue, mental fatigue, brain fog, memory problems, limb tremors, breathlessness. Our health system is a mess! I had to wait 3 months to see a cardiologist! Multiple costly GP appointments that took up to 2 weeks to get an appointment. Still no help!
4.24Emerge Australia, a national patient organisation for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which is increasingly also working with individuals impacted by long COVID, discussed the issues regarding access to long COVID clinics. It submitted:
Although Long COVID clinics are operational across Australia, they do not offer all Long COVID patients access to timely medical care. We are hearing from our Long COVID patients that these clinics are difficult to access – many have long wait periods and/or only the most unwell people are admitted.
4.25Submitters also discussed the challenges of visiting a long COVID clinic from a distant location as another barrier to accessing medical help and specialised care for their symptoms. For example, one long COVID patient commented:
My GP has provided really great support during the diagnosis journey, which I am very grateful for. Unfortunately, the area in which I live does not have a long COVID clinic, so I cannot access the specialised clinical services available to long COVID patients in other states… I do not have clarity on other treatments that may help me, or what my prognosis is. This is incredibly frustrating and is impacting my mental health.
4.26Another submission from a family member of a person with long COVID reported a similar inability to access any long COVID clinic:
…my family member has been enduring Long COVID symptoms for over 4-months – with no end in sight. Their Long COVID symptoms include ongoing fatigue, headaches, coughing, breathing problems, trouble sleeping, difficulties focusing on tasks due to fatigue and an ongoing feeling of ill health. My family member has no access to any Long COVID specialised treatment clinics in their area in regional Victoria, with most being located in city/metropolitan areas.
4.27The Committee received evidence that Aboriginal and Torres Strait Islander peoples experience additional barriers accessing care via long COVID clinics. The Aboriginal Medical Services Alliance Northern Territory highlighted the limited health services available in rural and remote areas:
The existing specialist long COVID clinics are not widely available, particularly for Aboriginal and Torres Strait Islander patients in rural and remote areas and have very limited capacity. Aboriginal and Torres Strait Islander people also face additional challenges navigating the healthcare system and accessing timely care and support.
4.28One individual discussed the response offered by some GPs to patients seeking help:
My family member has repeatedly visited their GP, requesting further treatment for crippling symptoms. However they were told: “There’s no effective treatment for Long COVID and so many people are going through what you’re going through. This is going to keep happening to a lot of people unless something is done.”
4.29The Committee heard that given that knowledge of long COVID is still emerging, GPs can be uncertain about how to respond to symptoms associated with long COVID or reluctant to provide a diagnosis. For example, one submission stated:
My GP said that she could not offer medical help for my condition, she had not been given any recommendations from any health department for patients with Long Covid, beyond ruling out any other illness via scans and blood tests. She was however sympathetic and believes I have post covid illness, but won’t diagnose me with Long Covid until… I am 3 months post covid infection as per the WHO [World Health Organization] recommendations.
4.30Another submission stated:
Being a patient suffering Long Covid in Australia is horrendous. Diagnosis is very slow, GPs are hard to book, there is no real knowledge and no real diagnosis. No medication to help symptoms because they are simply thought they will eventually resolve after months of suffering.
4.31Several patients with long COVID reported feeling as though their treating practitioners were not listening to them, or not understanding the nature of their illness. Associate Professor Nada Hamad, a physician researcher, described her experience as a long COVID patient. She told the Committee:
I saw several GPs and seven specialists and multiple allied health specialists in a long COVID clinic. No-one, not one person, was able to articulate why this was happening to me, to call it what it is and how long it would last, how to treat it or how to prevent it from getting worse with recurrent infection. In fact I had to advocate very hard for doctors to follow the evidence. I had to present them with the evidence. … My story would be repeated back to me, or relayed back to me, incorrectly, which I found astonishing, as a doctor.
4.32Associate Professor Hamad also expressed the view that many health practitioners were unable to easily access evidence-based information on long COVID due to the time pressures they are under. She recounted:
I understood, given this was a new problem, that everyone was really an experiment. In fact, the evidence was limited, but it was there. You just needed to know where to look and who to ask. No-one had the time...
4.33Another submitter described their ‘disheartening’ experience seeking explanation for their ongoing symptoms after a COVID-19 infection and stated:
My experiences with long Covid have been frightening. I was not prepared for the health issues that occurred after a mild Covid infection. …doctors have been thorough and performed every test, but when everything comes back ‘normal’, but you clearly feel like nothing is normal, it’s very disheartening. Doctors may then think it’s psychological which may certainly be part of it, but it’s not the whole story… It’s extremely important therefore to feel listened to and understood by your doctor. I’ve often heard the phrase, ‘we don’t know enough about it yet’. This provides little comfort to patients who are desperate for answers.
4.34Some individuals told the Committee they feel that their health practitioners are ignoring their symptoms. For example:
Since my first bout of COVID, I have had continued pain and numbness in my chest and shoulder. The pain varies between total numbness and burning agony, but never fully disappears. I have had cognitive confusion, headaches and extreme fatigue, dizziness and breathlessness. MRIs [magnetic resonance imaging scans] and blood tests have shown nothing of concern, and doctors appear to just be ready to ignore it.
4.35Mrs Rebecca Adolph, a nurse with long COVID, discussed her difficulty in trying to obtain timely and effective treatment and the financial burden of seeking care:
General Practitioners are reluctant to diagnose long covid… I understand they are wanting to rule out other health conditions before diagnosing long covid. The cost of increased GP visits, referrals to Specialists and cost of medical tests is also impacting. The prognosis is unknown, and after living with long covid for 8 months now, and not having any resolution in my ongoing symptoms, it is hard to see the light out of this tunnel. There is a lack of support for people suffering with long covid. Doctors say that the key is to pace yourself and rest, however as a busy working mum, I don’t have that luxury.
4.36In response to the lack of treatment options offered by health practitioners, some individuals have searched for their own solutions. For example, one individual said:
I was diagnosed quickly by my GP (4 weeks after initial infection), and for the first several months was told to ‘wait it out.’ Unsatisfied with this, I visited many different health care providers… Through trial and error of different medications, I was able to find things that relieved my symptoms.
4.37However, another submitter with long COVID highlighted that self-help was not an option available to everyone citing the financial barriers to care:
My GP listened to what I had to say and said she had other patients have said similar. I have joined some Long covid Facebook groups. But I don’t know where to look or turn for information and don’t have the money to try different options.
Adverse reactions to COVID-19 vaccines
4.38The Committee heard from some submitters that vaccination related illness can sometimes present as a long COVID-like syndrome. Adverse reactions to COVID-19 vaccines are also discussed in Chapter5.
4.39It is noted that some individuals experience asymptomatic SARS-CoV-2 infections, and it is therefore not possible to definitively rule out exposure to the virus in patients that report an adverse vaccine reaction.
4.40For example, Professor Kerryn Phelps AM told the Committee about examples of people developing symptoms mirroring long COVID after receiving a COVID-19 vaccine despite no known infection with the virus:
Within this group of vaccine injured individuals, there is a diminishing cohort of people who have symptoms following immunisation, many of which are similar to Long COVID (such as fatigue and brain fog), but who have not had a COVID infection. These people would be an important subset or control group for studies looking into the pathophysiology, causes of and treatments for Long COVID.
It is possible that there is at least some shared pathophysiology between vaccine injury and Long COVID, possibly due to the effects of spike protein.
4.41Similarly, COVERSE Ltd suggested that adverse reactions to COVID-19 vaccines could be mistaken for long COVID, given the ‘significant’ overlap in symptoms. COVERSE Ltd also highlighted the lack of social and medical support available to people that have experienced an adverse vaccine reaction:
…most of the vaccine-injured people in Australia have faced derision from public figures and unconscionable gaslighting and bullying by doctors, work colleagues, friends, and even from family. … For many of us, despite our best efforts to stay connected and request help, other vaccine-injured people are our main source of support, resources and hope.
4.42One submitter who was diagnosed by their GP as having ‘long COVID-like symptoms’ after receiving the COVID-19 vaccine told the Committee:
For the record, prior to my injury I was (and remain) pro-vaccination, and I still support COVID-19 vaccination; it is just unfortunate that I am part of a small proportion of people vaccinated for COVID that subsequently suffer ‘long COVID-like’ symptoms.
…after my second COVID vaccination I began experiencing significant neuropathic pain in my arms and legs, together with significant post-exertion fatigue. This has had a major impact on my work and home life; I went from being a fit, very active and busy professional to leading a slow and sheltered life, where my energy and activities are seriously limited and my quality of life is poor.
While I am lucky to have an excellent GP, in the ensuing 18 months I have been on a merry-go-round of testing, specialist visits and trialling various treatments; I have had to organise all of this myself, in spite of lengthy waiting lists for specialist visits (6 to 8 months is normal). While Medicare has subsidised some costs, I remain out of pocket many thousands of dollars (not counting lost income during this period); I shudder to think the impact this condition has on people unable to self-fund their care as I have.
A general physician specialising in “hard cases” recently diagnosed me with ‘long COVID-like symptoms’, though he was not able to provide any treatments beyond what I had already identified myself. While some medications (in particular low dose naltrexone for fatigue) have provided a degree of respite, I still have no sense of when or even if I will recover.
Impacts on employment and income
4.43Many individuals with long COVID described to the Committee how their illness has impacted their employment and income. Some submitters said that they needed to reduce their work hours due to their illness and others had to stop working completely depending on the severity of their symptoms. This has negatively impacted their financial situations.
4.44For example, Karen Johnston told the Committee that she can no longer work due to long COVID and as a result needs financial assistance from her elderly parents:
The impacts have absolutely destroyed my life in all areas… My health is longer the same, I cannot work to earn money or go out for very long. My struggle affects my elderly parents who have to help me out financially as Centrelink is not enough and they end up without money as well. … The impact of Long Covid on my family I believe has caused so much grief that I fear it will never be the same again and our quality of life is over.
4.45A submission from Theresa Sheppard discussed similar challenges:
Financially I am going backwards. I am no longer able to work and am receiving Centrelink benefits. This pays my rent and puts basic food on the table, but does not allow for other bills such as phone/internet, electricity, school fees, clothing, sports activities for my boys and medical expenses.
4.46One individual described how their long COVID symptoms have impacted their ability to perform at work:
Where previously it was easy for me to do my job, which is demanding and requires managing many priorities, now I constantly find it a struggle. It’s hard for me to think straight and listen to people when they talk, pay attention, read or concentrate. I am now forgetful and struggle to articulate my thoughts clearly.
4.47Another submitter said they resorted to using their leave entitlements to cover the time they were unable to work due to long COVID:
I tried to work part time with reduced hours, but was unable to bear the chest pain. I have used up all my accrued sick leave, and I'm on my last week of annual leave, so my income is about to disappear.
4.48The Committee heard that people employed on a casual basis and not entitled to sick leave who have long COVID are particularly financially impacted. One submitter described their family member’s experience:
As a casually employed staff member in Aged Care they did not have access to any paid sick leave. As a casually employed staff member, they were unable to earn his usual income for over 2-weeks, and as a result needed to seek out support from friends and family to cover urgent expenses. … After additional rest they returned to work, despite not feeling fully recovered – and this was primarily due to pressure and a lack of understanding from their employer, plus the pressure of staff to return due to chronic staff shortages in Aged Care.
4.49Another submitter who had to reduce their work hours due to long COVID said they had to use their superannuation to cover living costs:
As a self-employed part-time worker, I still don’t have income protection, and as a full-time mum of 4, I had very little superannuation and I took it all out when Covid shut down all my work…
Now with Long Covid, I have to cut down my work to just a few counselling clients a week, due to fatigue and other symptoms. Even counselling on Zoom is exhausting. I don’t want to go onto JobSeeker as I can still work a little, and don’t know if I could receive JobSeeker as I don’t want to apply for work I cannot do. I don’t have superannuation or income protection.
4.50In addition to people with long COVID sometimes needing to forego income due to their illness, the Committee also heard about the financial impacts of seeking medical help. For example, Felicity Gay submitted:
I estimate Long Covid has cost me around $10,000 in medical expenses and $30,000 lost income… I used to work full time. I attempted to work part-time after getting Covid but after 2 months had to stop work completely. I didn't work for 5 months. I attempted to return to part-time work at the start of October but haven't managed more than a few hours a week.
4.51One submission suggested that workplaces should adjust to make it possible for a person with long COVID to return to work:
There are no guidelines on return to work and workplace accommodations for people with long COVID. No one knows what to do. There is still a lot of administrative burden and a lack of understanding about the realities of living with Long COVID. There are already excellent return to work models… but these need to be tailored to the individual and for long COVID. More importantly, there needs to be nationwide awareness and recognition that people need a suitable return-to-work plan and workplace accommodations.
4.52Some people with long COVID have successfully negotiated reduced work hours with their employer. For example, one submitter told the Committee:
I am really lucky to be working at a supportive workplace. They have been understanding from the beginning, always telling me to prioritise my health and choose what hours work for me. I am now working about 7 hours a day but needing to have a rest in the middle (I do 3.5 hours at home, 1 hour rest, 3.5 hours at the office). While this isn’t too different to a full day and I am lucky that I can manage challenging and demanding work, I find it mentally very hard to not be able to do a ‘normal’ day at the office. I really love my work and look forward to getting back to my previous hours.
4.53The Committee heard that if there is a large number of long COVID cases, many individuals may not be able to work to their full capacity. The Victorian Department of Health noted the potential productivity implications of long COVID:
Anecdotally, local clinicians report that individuals with significant long COVID symptoms have a substantial reduction in their ability to carry out normal daily activities such as attend work or carer duties. This has a broader impact on sectors that are depending on a stretched workforce.
4.54Given these impacts on employment and income, many submitters called for specialised income support for people diagnosed with long COVID. For example, the Brimbank Community-Led Covid Group recommended:
Centrelink special Income support for GP diagnosed long COVID sufferers, non-means-tested, for at least up to 12 months, while sufferers are unable to work due to this disease, to alleviate immediate family and financial stress, and support services to help suffers adjust to new work or wok [sic] approaches, or potential pathway to disability support for those severely impacted and unable to work at all.
4.55Inner Melbourne Community Legal and the Royal Melbourne Hospital (Allied Health Department) made a similar recommendation:
Long COVID patients need access to proper income support to make ends meet until they recover. The stress of struggling to pay the bills, to pay the rent or mortgage, only makes recovery more difficult.
- Workers eligible to make a workers’ compensation claim need support to access help;
- People who are not eligible to access workers’ compensation need a special COVID income support payment to make ends meet until they recover; and,
- More funding and increased access is needed for people to receive social work support, legal support, and financial counsellors assistance early to elevate the financial and mental stress that can be a consequence of long COVID.
- Other submissions suggested that people with long COVID should be eligible to access the National Disability Insurance Scheme and/or the Disability Support Pension.
- The Australian Council of Trade Unions specifically recommended income support for people with long COVID who do not have access to sick leave or are employed casually.
Impacts on mental health and social and daily activities
4.58Many people with long COVID who wrote to the Committee said that reduced ability to participate in social activities and to perform everyday tasks impacts their mental health and quality of life. Their evidence also noted the impacts ongoing illness can have on parents with young children and carers.
4.59Submissions discussed how these impacts can extend to household and family members who are called upon to provide care or to work additional hours, placing relationships with family and friends under pressure.
4.60Some individuals with long COVID described feeling vulnerable in social settings and being concerned about further COVID-19 infections.
4.61Lastly, the Committee heard that the challenges related to long COVID could affect educational opportunities.
Mental health impacts
4.62The Committee was concerned to hear from many individuals about the negative impact of long COVID on their mental health.
4.63The submissions from people living with long COVID included troubling insights into their experiences of declining mental health. Their comments included:
- I am depressed thinking about the lost friendships and the strained relationship with my husband… My mental health has deteriorated as I grieve the person who I used to be, not knowing if I will ever be that person again.
- The frustration and sadness I feel on a daily basis that I am unable to live how I used to is beginning to affect my mental health. It is a lonely illness, one that lacks support, and also, I feel is poorly recognised and is still being accepted.
- My mental health is deteriorating as I feel absolutely useless.
- I am very anxious about re-infection… It has made social interaction very difficult as I’m continually scared of contracting the virus again and the ongoing implication of being unwell for a long period. My mental health has suffered greatly as a result.
- I had also become depressed as my life was dramatically altered, and was fixated on long Covid. That I’m [sic] turn impacts on your family members and social and mental well-being.
- My mental health has taken a massive hit during this entire ordeal. I’ve been seeing a psychologist weekly for the past 12 months. I had to be admitted to a mental health facility for three weeks to help me try and cope with what I was dealing with. I am now on antidepressant medication and will be for the foreseeable future.
- Multiple witnesses and submitters reported that long COVID is generally associated with poor mental health, including mental health conditions such as anxiety and depression.
- Among those who advocate that there is an increased risk of mental health difficulties among people with long COVID, different perspectives were heard over whether these are caused by long COVID itself, individuals’ experiences of social isolation and stigma related to long COVID, and/or may be an exacerbation or reappearance of mental health issues that existed prior to the development of long COVID.
- The Department of Health and Aged Care’s submission explained that while evidence about the mental health impacts of long COVID is still emerging:
Many symptoms have been linked to long COVID, including fatigue, which studies suggest is among the most common and debilitating symptoms. It is known that fatigue can worsen symptoms of depression and anxiety and, in turn, depression and anxiety can worsen fatigue. Further, there is some evidence that people with pre-existing mental distress, including depression, anxiety, worry, perceived stress and loneliness, may be at increased risk of both developing long COVID and experiencing impairment in activities of daily living due to long COVID.
4.67Associate Professor Alex Holmes, a member of the Victorian Post-Acute COVID-19 sequelae research group, reported that there is currently a limited understanding of the frequency and severity of psychological symptoms potentially associated with long COVID, since ‘robust population studies are not available.’ However, he outlined that relevant key learnings to date include:
- Long COVID is not primarily a psychological condition.
- Some individuals with long COVID are fearful that, in the absence of abnormal test results, health professionals will conclude that the condition is psychological or ‘all in their head’. …
- A degree of anxiousness, uncertainty, concern about current and future implications, increased attention to physical symptoms and cognitive difficulties is normal. …
- Individuals with more severe symptoms sometimes feel alienated, isolated, abandoned and not listed [sic] to.
- Associate Professor Holmes added that ‘A minority of individuals with long COVID may develop a secondary psychological disorder’ in response to long COVID.
- The Royal Australian and New Zealand College of Psychiatrists also noted that some individuals with long COVID will develop mental health issues:
COVID-19 can lead to a wide range of deleterious health effects. While most people recover well, some will go on to develop serious mental health conditions. Repeated COVID-19 infection and/or the development of long COVID-19 has extended this risk of psychological trauma.
4.70In its submission, the Australian Psychological Society & Phoenix Australia Centre for Posttraumatic Mental Health Ltd noted that multiple factors could explain the presence of anxiety in long COVID patients, such as ‘it being an aftereffect of the infection itself’, an exacerbation of existing anxiety driven by the implications of long COVID, and/or an effect of any traumatic experience associated with the COVID-19 infection itself such as being in an Intensive Care Unit (ICU).
4.71As discussed in Chapter 3, research is underway that aims to understand the neurological factors relevant to long COVID. However at the current time, the Committee heard that there is insufficient evidence indicating whether psychological and cognitive issues associated with long COVID ‘have a clear biological basis’, or are in fact a secondary response to long COVID itself or related factors.
4.72Multiple individuals with long COVID expressed a frustration about healthcare practitioners attributing their long COVID symptoms to psychological factors such as anxiety or depression. For instance, two individuals quoted in the submission from the Australia Long Covid Community Facebook Support Group said:
This is the worst part when you're struggling with your health and there's an obvious connection to the virus, but doctors minimise the symptoms and blame anxiety. Meanwhile you're stuck with debilitating symptoms that need treatment…—Respondent 277
[I wish I would] Be able to see any GP and they would have the knowledge or at least be willing to look into it before dismissing it entirely or insisting it's just mental health and pushing antidepressants—Respondent 224
4.73Mr Robin Austin, a member of the Australia Long COVID Community Facebook Group argued that mental health issues are a response to long COVID, and that the lack of information about long COVID was a core contributor to poor mental health outcomes for people with long COVID. He stated:
The important point is that there are a lot of mental health problems with long COVID, but fundamentally that is brought on by the long COVID. Secondly, someone said, 'We shouldn't over diagnose because that could make people's mental health worse.' For me, and I think for a lot of people—from all the comments I read on the Facebook page, the posts—it is the lack of diagnosis, the lack of information that's causing the mental health problems.
4.74Lived Experience Australia, a national representative organisation for Australian mental health consumers and carers, noted the potential for loneliness and isolation among long COVID patients with mental illness:
This population disproportionately experience social exclusion and limited social networks, unemployment and fewer opportunities for educational and social participation, discrimination and stigma, and loneliness. Social connection and participation, and having meaningful and purposeful activity, are central to recovery from mental health conditions. Long COVID has hindered recovery for many individuals already disadvantaged by these issues.
4.75The Committee also heard that treating practitioners can have difficulty separating the symptoms of pre-existing mental illnesses from those of long COVID. One submitter reported:
When I finally got in to see the doctor, they tried to shoehorn me into a depression diagnosis (which would have enabled them to send me straight to the psychiatry outpatient’s clinic) and refused to consider any alternatives or order further testing. I believe that was due partly to their own excessive workload, but also due to common misconceptions that chronic fatigue is always a symptom of either depression or a functional disorder. I tried to advocate for myself, as I have been depressed in the past and have studied enough psychology myself to understand the difference between clinical depression and fatigue. However, it was clear that this doctor would rather drop the matter altogether than explore other options…
4.76One submitter suggested that treating practitioners’ inability to distinguish between long COVID and mental health conditions may cause anxiety among people with long COVID:
That to me is truly frightening that messaging can be so wrong that medical professionals are not believing [patients]. There is far too much GASLIGHTING from doctors with Long COVID. Too many of them think it is anxiety related when it is not. In fact, these types of doctors cause secondary anxiety for patients because they are pigeon holed and dismissed.
Quality of life and wellbeing – impact on activities of daily living
4.77Many submissions described how long COVID can have broad impacts on a person’s quality of life and wellbeing. For example, some submitters told the Committee that they were no longer able to undertake home duties, go out into the community or exercise.
4.78One submitter with long COVID explained their family has taken on household duties:
My health issues suffered after contracting Covid-19 have affected my family as they need to take on a lot more responsibility and work for the household. It's impacted their ability to live a normal life due to my sickness.
4.79Another submitter described how they are no longer physically able to participate in the community with their children:
Since having COVID, I feel like I am a shell of who I was. Prior to COVID, we were a very active family and we would go on hikes, to the park, zoo, museum and other outings. … Post-COVID, I am no longer able to take my children on an outing… as I physically cannot manage walking more than a few 100 meters without becoming short of breath, experience chest pain and heart palpitations.
4.80A submission from Thomas Murdock discussed how long COVID affected his ability to exercise and socialise:
Every part of my life has been affected by long covid. I used to easily run 5kms in 20 minutes, but a few months ago I wouldn’t have been able to manage 20 minutes of gentle walking. … My social life was also strongly impacted by this fatigue. For about 4 months I couldn’t manage going out most days, and when I did it was only minor things… Talking with anyone was hard because of the fatigue, but also because of my concentration levels and memory loss. Mid conversation I would just zone out, or sometimes I’d forget what we were talking about.
4.81Another individual with long COVID described the impact of their brain fog:
The brain fog still comes and goes and in my mind that is the most terrifying part even more than the exhaustion. … I worry about being out of the house for more than a couple of hours or being far from home. Some days the whole thing just makes me cry. I know this isn’t sustainable long term and I hope it is going to start getting better soon.
4.82Another submitter told the Committee about how long COVID prevents them from shopping and cooking:
I had just graduated university and was preparing to enter the workforce full time. Then I caught covid. I was unwell for roughly 10 days with a cough, extreme body aches, headaches, sore throat, and fatigue. Since then, I have not been the same. More than six months on, I still get exhausted doing basic things like grocery shopping and cooking. … I have been unable to move out of home as I need help and support from my family to do day-to-day things, like changing the sheets on my bed.
4.83Theresa Sheppard describes the impacts of her long COVID fatigue leading to social isolation:
On a good day I can move from my bed to the couch, I can make myself a cup of tea and maybe put clothes in the washing machine before needing to lie down. On a bad day, I don't get out of bed and I sleep/rest with no stimulus i.e. no tv, no reading, no music, no phone. Everything I do uses energy I don't have. Due to these symptoms, my social interactions have reduced to barely nothing.
4.84The Committee was concerned to hear that long COVID has also caused some individuals to defer major personal decisions or milestones. For example, Courtney Baker said they have postponed personal milestones as a result of their long COVID:
…doctors tell me they don’t know if or when I will get better. I am getting married next year and have stopped planning since I don’t know if I will be well enough.
4.85Another individual shared that they and their partner deferred trying to have a second child until they recover from long COVID:
We were trying for a little brother or sister before I got COVID and that's now been put on hold until I get better. That's really actually quite sad for us, but hopefully I'll be better soon and we'll be back on track with that.
Parenting with long COVID
4.86The Committee received submissions from parents who reflected on the challenges of parenting while they are sick with long COVID. Some submitters expressed regret that they were no longer able to do many of the activities that they used to enjoy doing with their children prior to developing long COVID. Others discussed new reliance on other family members to take on caring roles.
4.87The Committee received a submission from Angela O’Connor, a neuroscientist no longer able to work due to long COVID. Ms O’Connor commented:
I am 36 and have two small children who I am barely able to parent any longer; I feel like a crushed shell of a human being who will only become more of a burden to her family and the health system as I age. My body now requires enough maintenance and care that it is similar to having another toddler in the household.
4.88Another submitter said:
I can’t take my children to their multiple appointments each week, social events or even play with them. This breaks my heart the most! Reading books together was a regular bedtime routine and I can’t even do that with them.
4.89Rowena Findlay told the Committee about how she could no longer attend her sons’ sporting activities due to her long COVID symptoms:
I'm a mother of 2 primary school boys, who I use to take to sporting activities most nights, now my husband was having to do this. Driving made the fatigue worse. I would sometimes push a little too hard and then have to stay in bed for 2 or 3 days. By 12 weeks the fatigue lifted, but the brain fog is still present. The brain fog gets a little better every week. Multitasking is still hard, especially by the end of the day.
4.90Another submission said that they required in-home help:
I’m unable to work. I’m unable to look after my 3 young children. My children have missed school on occasion as I couldn’t get them ready, or get them to school. I’m unable to cook/clean or even look after myself, needing food to be prepared for me, as well as my family. We therefore require in-home help to look after me, to look after my kids, as well as complete basic household tasks. I’ve become a significant burden to my friends and family, as well as our community as we require so much help just to do the most basic things.
Changes to roles and responsibilities
4.91In addition to looking after children, submissions noted the pressure that long COVID often places on other household members to keep households running. For example, one submitter explained:
I can’t work, I can’t look after my 3 young kids. My husband has become carer to me, and we’re juggling help from our friends, family and paid services just to keep our family fed and clean. Along with the financial stress of suddenly not working, the emotional stress on my family is huge.
4.92Angela O’Connor described how her inability to earn an income, contribute to household chores and help with children’s activities has placed pressure on her partner:
My partner – who currently works two jobs – has had to take over my share of chores around the house, cook all the time, and drive me around to appointments… My husband is now the sole bread winner and likely will continue to be for the remainder of our lives, which puts a lot of pressure on him. My children no longer have an active, involved parent; I am not capable of taking them out to play sport or do fun activities or even just attend friends' birthday parties.
4.93The Committee heard that these pressures can negatively impact relationships with family and friends:
My immediate family have had to carry the load physically, mentally and financially… my parents believe that covid isn't real and that I should just get over it. It has very negatively impacted my relationship with my parents who are antivaxxers and believe only misinformation. I rarely see my friends anymore and I can't go out much anymore as I am worried about catching covid again.
4.94Even with supportive family and friends, some individuals reported difficulty with their social lives. One submitter advised:
I am lucky to have really close and supportive friends, family and housemates. I could not do it without them. They have all cooked, shopped, cleaned and driven me around, while I can do these things, it’s not to the same extent. I am really grateful for everything they have done. No one has ever questioned how I’m feeling. It is hard to maintain a social life.
4.95Another person described how being ill with long COVID disrupts their caring responsibilities:
A big impact of long COVID is on caring. I am also now unable to care for my elderly parents who have many health issues. I was providing a lot of care to them before I got COVID. Now all I can do is apologise for not being there for them when they need me.
4.96Carers Australia commented on research regarding shifts in caring responsibilities brought about by the pandemic, and noted that caring responsibilities cannot always be re-allocated:
A recent report by the International Alliance of Caring Organisations… found that nearly one in three (29%) carers in the Asia Pacific region started their responsibilities as a result of the pandemic, higher than the global average. This will be exacerbated if there are no other family members or friends able to provide these roles, or there are many people impacted within the household. It should not be assumed that the community will ‘step up’ or that other family will step-in because ‘it’s what family should do’ - the demands of the caring role often go beyond what would normally be expected of these relationships.
4.97Some submissions commented on how long COVID could negatively impact social lives by making a person fearful of being reinfected with COVID-19 in social settings. For example, one individual reported:
The impact has been profound. I am unable to perform basic daily tasks… I’m so concerned about what yet another infection will do to me that I have ceased socialising in most settings.
4.98Damien Wood described that he experienced severe symptoms for 10 to 12 weeks after a COVID-19 infection, and that he is concerned about it occurring again. He submitted:
I am very anxious about re-infection… It has made social interaction very difficult as I’m continually scared of contracting the virus again and the ongoing implication of being unwell for a long period. My mental health has suffered greatly as a result.
4.99Another submission echoed similar concerns about COVID-19 reinfection exacerbating their long COVID symptoms and the risks of acquisition from school aged children. They stated:
I feel like I still need to limit my life and interactions in case I catch it again and the long term effects are made worse. I still mask and limit public spaces, but both infections were originally brought home from a school setting by my children, where there are no preventative measures in place. This has left me feeling incredibly anxious that eventually a subsequent infection will either leave me completely disabled or dead.
School and education
4.100Some submissions discussed how long COVID has impacted their engagement at university and their ability to complete their studies as planned. For example, Courtney Baker, a psychologist and person with long COVID, submitted:
I was active and healthy. I had to quit one job, stop my phd [PhD] and am now on unpaid leave from my remaining job. My income has been slashed and I am spending a lot of money on doctors and treatments.
4.101One submission from a carer of a school-aged child with long COVID stated:
…my previously high achieving and engaged child was so unwell that she was regularly absent from school and was unable to participate fully or concentrate even when she was at school. She frequently missed extra-curricular and social activities either because she was too unwell or concerned about how much worse she would feel in the hours/days afterwards. …her teacher has been understanding; acknowledging the substantial fatigue, pain, brain fog, concentration and memory issues that were not present in term 1.
4.102The Committee also heard that the school performance of children of parents with long COVID could be negatively affected. One submission advised:
My 7-year-old’s teacher reported a significant change in behaviour from my 7year old at school, even without her knowing I was unwell. The impact affects every part of our lives.
4.103A submission from Jamie Walker explained how long COVID has impacted their university studies:
Most of the impacts are being able to get out of bed to attend my university classes, some days I find myself passing out asleep in class, other days I'm crashing into bed the moment I get home. As a carer for one of my family members, it makes it difficult not only to me but to them, as I'm supposed to be able to care for them, but the added exhaustion has made me feel like I'm lugging around a ball and chain attached to all my limbs.
4.104The Committee acknowledges individuals who are experiencing long COVID themselves or otherwise being impacted by long COVID.
4.105The Committee recognises the challenges and hardship for people affected. Long COVID has sizeable impacts on productivity and livelihoods. More can be done to increase awareness about long COVID in the general community and the medical profession specifically.
4.106The Committee notes that while some symptoms and impacts from long COVID were common themes in the evidence, there is variation in symptoms depending on individual circumstances.
4.107Later in this report the Committee has made a range of recommendations informed by these testimonies. The Committee appreciates the courage of those who came forward to share their valuable experiences and perspectives.
4.108Although adverse vaccine reactions are not the focus of this inquiry, the Committee acknowledges that although very rare, these do occur. This issue is discussed further in Chapter 5.