The 2020 COVID-19 pandemic resulted in far-reaching consequences on the health and well-being of people in Canada and the world at large. Today, individuals who were, or are infected with COVID-19 continue to experience disabling symptoms that prevent daily work, play, and function. These residual chronic, episodic symptoms are commonly referred to as “Long COVID”, and may include fatigue, headaches, poor sleep, shortness of breath, anxiety, and more. People experiencing Long COVID symptoms may also notice impaired physical and cognitive function, leading to a change in their quality of life.

Working with rehabilitation experts and people with living experience of Long COVID, Realize has developed a suite of resources on long COVID, including a set of recommendations for employers, insurers, human resource personnel and rehabilitation professionals on return to work, a roadmap for disability income benefits and a tip sheet for people living with Long COVID on managing health care interactions and disability claims.

More Resources on Long COVID and Work:

1. The Long COVID Sessions [PODCAST]: This podcast was created to reach the growing community of people with Long COVID who are looking for answers in a sea of uncertainty.
2. Long COVID Podcast [PODCAST]: “Although there is currently no “cure” for Long Covid, and the thousands of people still ill have been searching for answers for a long time, people have recovered and in this podcast I hope to explore the many things that can be done to help, through a mix of medical experts, researchers, and personal experience from those who know it best – the Long Haulers”.
3. Long COVID, Episodic Disability and Labour Force Participation
   • Authors: Habitus Consulting Collective & Long COVID and Episodic Disability Study Team [O’Brien KK, McCorkell L, Malli N, McDuff K, Chan Carusone S, Cheung A, Goulding S, Kelly M, O’Hara M, O’Connell S, O’Donovan I, Thomson C, Wei H, Stokes R, Fay J]
   • Country: Canada, Ireland, UK, USA
   • New policy brief on Long COVID and labour force participation
   • Points of interest:
     • “I liken it to a rollercoaster ride and you’re like up and down…there are good days and bad days.” -Research Participant [P16]
     • “Findings from the study highlight the episodic and multidimensional nature of disability experienced among adults living with Long COVID. These episodes can be hard to predict in terms of severity and duration, with symptoms not easily measurable with readily available diagnostic tests in standard clinic practice.” [pg. 27]
     • “The study recommends that clear recognition and diagnostic criteria of episodic disability associated with Long COVID.” [pg. 28]
4. Episodic disability and adjustments for work: the ‘rehabilitative work’ of returning to employment with Long Covid (2024)
   • Authors: E Anderson, K Hunt, C Wild, S Nettleton, S Ziebland & A MacLean
   • Country: UK
   • 65 Narrative Interviews conducted between 2021-2022
   • Points of interest:
     • “There is very little advice for people with Long Covid on how best to return to work. Long Covid is not yet officially classified as a ‘disability’ in the UK.”
     • “People with Long Covid may have symptoms others cannot see and symptoms that vary. One day symptoms may be very severe and debilitating and other times they are less severe.”
     • “Sickness absence policies that classify employees simply as either ‘able’ or ‘disabled’ do not work for people with unpredictable illnesses that vary in their severity, like Long Covid.”
5. Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study (2023)
   • Authors: KK O’Brien, DA Brown, K McDuff, N St. Clair-Sullivan, P Solomon, S Chan Carusone, L McCorkell H Wei, S Goulding, M O’Hara, C Thomson, N Roche, R Stokes, JH Vera, KM Erlandson, C Bergin, L Robinson, AM Cheung, B Torres, L Avery, C Bannan, & R Harding
   • Country: Canada, United Kingdom, United States and Ireland.
   • 40 participants took part in online semistructured interviews and participant visual illustrations between 2021 and 2022.
   • Points of interest:
     • “Disability living with Long COVID was described as episodic, characterised by fluctuations in presence and severity of health-related challenges, which may be unpredictable in nature, occurring both within the day, and over the long-term of months and years living with Long COVID.”
6. Long COVID Through a Public Health Lens: An Umbrella Review (2022)
   • Authors: V Nittas, M Gao, EA West, T Ballouz, D Menges, S Wulf Hanson & MA Puhan
   • Country: Switzerland
   • synthesized existing evidence on prevalence, as well as clinical and socio-economic aspects of Long COVID.
   • Points of Interest:
     • “Almost 50% of primary studies reported some degree of Long COVID-related social and family-life impairment, long absence periods off work, adjusted workloads, and loss of employment.”
     • “Long COVID will likely have a substantial public health impact. Current evidence is still heterogeneous and incomplete. To fully understand Long COVID, well-designed prospective studies with representative samples will be essential.
7. Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative study (2024)
   • Authors: KK O’Brien,  DA Brown,  K McDuff,  N St. Clair-Sullivan,  S Chan Carusone, C Thomson,  L McCorkell,  H Wei, S Goulding,  M O’Hara, N Roche, R Stokes, M Kelly,  AM Cheung,  KM Erlandson,  R Harding,  JH Vera,  C Bergin, L Robinson,  L Avery,  C Bannan, B Torres, I O’Donovan, N Malli,  P Solomon
   • Country: Canada, Ireland, United Kingdom, and United States
   • determining the applicability of the Episodic Disability Framework to conceptualize the health-related challenges experienced among adults living with Long COVID.
   • Points of Interest:
     • “The Episodic Disability Framework provides a way to conceptualize disability the multidimensional and episodic nature of disability experienced by adults living with Long COVID. The Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to enhance practice, research, and policy in Long COVID”.
     • “Experiences of disability were consistent with the three main components of the Framework:
       1. dimensions of disability (physical, cognitive, mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion, uncertainty);
       2. contextual factors, extrinsic (social support; accessibility of environment and health services; stigma and epistemic injustice) and intrinsic (living strategies; personal attributes) that exacerbate or alleviate dimensions of disability; and
       3. triggers that initiate episodes of disability”
8. (2021) COVID-19 infection and long COVID – guide for workers
   • Author: European Agency for Safety and Health and Work
   • Country: Europe
   • Guide for recovering workers
   • Points of Interest:
     • “Although recovery from COVID-19 can be slow, many people improve with time, and treatments are expected to improve as more becomes known. Returning to work is part of the recovery process, even if it must be flexible or phased at first”.
     • “If you are starting a new job, you may be asked if you have any health problems for which you need support to do your job. You do not have to tell anyone this, but if you would like support, for instance because you have problems as a result of COVID-19, you can ask to be referred to the occupational health service or physician”.
9. (2021) COVID -19 infection and long COVID – guide for managers
   • Author: European Agency for Safety and Health and Work
   • Country: Europe
   • Supporting returning workers: Key points
   • Points of Interest:
     • “One in five people has symptoms after four weeks, and 1 in 10 has symptoms for 12 weeks or longer. For some, symptoms may last many months”.
     • “Evidence shows that line managers have a significant impact on successful return to work; what you do and how you behave can affect whether the returning worker is able to return to and stay in work. You do not need to be an expert in long COVID or have all the answers, but it is important that you are there to support the returning worker, listen to their concerns and act where you can”.
10. (2024) Episodic disability and adjustments for work: the ‘rehabilitative work’ of returning to employment with Long Covid:
    • Author: Anderson, E., Hunt, K., Wild, C., Nettleton, S., Ziebland, S., & MacLean, A. (2024). Episodic disability and adjustments for work: the ‘rehabilitative work’ of returning to employment with Long Covid. Disability & Society, 1–23. https://doi.org/10.1080/09687599.2024.2331722
    • Country: UK
    • 65 Narrative Interviews conducted between 2021-2022
    • Points of Interest:
      • “There is very little advice for people with Long Covid on how best to return to work. Long Covid is not yet officially classified as a ‘disability’ in the UK”.
      • “People with Long Covid may have symptoms others cannot see and symptoms that vary. One day symptoms may be very severe and debilitating and other times they are less severe”.
      • “People with Long Covid report sadness, guilt and fear about being unable to work as well as they had done before”.
11. (2024) Long COVID, Episodic Disability and Labour Force Participation
    • Author: Habitus Consulting Collective & Long COVID and Episodic Disability Study Team (O’Brien KK, McCorkell L, Malli N, McDuff K, Chan Carusone S, Cheung A, Goulding S, Kelly M, O’Hara M, O’Connell S, O’Donovan I, Thomson C, Wei H, Stokes R, Fay J). (2024). Long COVID, Episodic Disability and Labour Force Participation: Calls to Action for Government, Employers, Human Resource (HR) Professionals, Insurers and Benefit Providers
    • Country: Canada, Ireland, United Kingdom, United States of America
    • The policy paper highlights 13 calls to action for governments, employers, benefit providers, HR professionals, and insurers to create conditions that facilitate better outcomes for people living with Long COVID and their employers.
    • Points of Interest:
      • “Across Canada, among those who were in school or employed, Long COVID resulted in more than 20% missing school or work, with 24 missed days on average”
      • “Navigating this maze is incredibly complex and can be further challenging for those trying to access services who are experiencing cognitive impairment living with Long COVID”.