by Mia Feldman

Graphic design by Yu-Wen Jan

Autoimmune diseases, such as Crohn’s disease, rheumatoid arthritis (RA), and lupus, are a class of conditions in which the body’s immune system mistakes its own healthy tissue for foreign invaders, leading to severe inflammatory reactions. It is well established that individuals with autoimmune diseases are at high risk of adverse response to infections; back in 1953, a landmark study found that among a cohort of RA patients who had passed away, infections were the cause of death in 25% of the cases.¹ 

In 1976, the Union of the Physically Impaired Against Segregation and the Disability Alliance premised the social model of disability, distinguishing between impairment, the loss or abnormality of a physiological function, and disability, the restriction to perform tasks of activities the same way an able-bodied person can.² For example, if a student uses a wheelchair and their school does not have a ramp, they cannot enter the building, resulting in a disability. The inability to climb stairs is an impairment, but it only becomes a disability when the environment prevents the student from accessing the building. Based on these definitions, it becomes clear that the extent and nature of one’s “disability” is contingent on their environment. The pandemic drastically altered our environment, and the social model of disability can be used to understand the stories of our community members living with autoimmune conditions. I heard the stories of three young adults living with autoimmune diseases during COVID-19: Maryam Younis, Kiko Huang, and Mycala Casselman. 

The early stages of the pandemic were terrifying for everyone. Little was known about how the virus was transmitted and what the early symptoms looked like, leaving many anxious and afraid. Notably, these changes amplified barriers and challenges for individuals with autoimmune conditions. Maryam Younis, a recent University of Toronto (U of T) graduate, felt especially anxious when COVID-19 began. She explained that she was scared about how her body would react if she became sick and was constantly on high alert. Younis was also directly impacted by the spread of COVID-19 misinformation. Starting in March 2020, President Donald Trump made unsubstantiated claims at press conferences and on social media about how hydroxychloroquine may be used to treat COVID-19.³ Younis takes hydroxychloroquine to treat her condition and worried that panicked masses would have hoarded the drug she needs. Thankfully, she was able to maintain access to her medication, but the uncertainty regarding the future of her access to care placed a significant burden on her mental health. 

Kiko Huang, a graduate student at U of T’s Institute of Medical Science, also expressed a change for the worse in her access to healthcare during the pandemic. Huang has juvenile idiopathic arthritis and chronic inflammation throughout her body, including in her eye. This condition is called “uveitis” and is treated with glucocorticoids. A side effect of the treatment is increased ocular pressure, which must be monitored closely by an ophthalmologist. Prior to the pandemic, Huang would visit her ophthalmologist monthly. However, during the pandemic, she didn’t visit the specialist for nearly a year, and as a result, developed glaucoma in her right eye. Amazingly, Huang’s graduate research focuses on utilizing high-dimensional healthcare usage and billing data to guide health policy for the treatment of glaucoma. Her commitment to helping others is truly admirable.

The restricted access to care and widespread misinformation disproportionately impacted those with autoimmune diseases, which can be understood as a disabling consequence of the pandemic. However, that is only part of the story. Mycala Casselman is a recent graduate from Brescia University College with double honours in Psychology and Disability Studies. She is currently working at an early education centre focusing on artistic expression and sensory exploration. Casselman explained to me that the pandemic has changed social consciousness about the spread of disease, shifting norms to create a more accessible environment for those with autoimmune conditions. 

Those with autoimmune disease must be hypervigilant about contracting an infection. Casselman described that “weirdly, having an autoimmune disorder for my whole life prepared me for COVID-19.” Typically, the responsibility to prevent infection lies solely on those with autoimmune impairments, but this is changing. Both Huang and Casselman explained to me that at the height of the pandemic, their roommates went to great lengths to avoid breaching their “bubble” and increased masking and handwashing to limit the spread of COVID-19. It has become more commonplace to wear a mask on public transportation or to stay home from work if you are feeling sick. These methods are not only to prevent oneself from becoming ill but to protect the health of those around us. There has been a reckoning in the public of a shared responsibility to keep each other safe. A shift in these norms creates a safer environment for everyone, including those with autoimmune conditions. 

This social shift not only altered individual behaviour but also opened doors for accessibility opportunities via workplace policy changes. Reduced workplace accessibility poses a major barrier for individuals with impairments, as many employers fail to provide necessary accommodations. This inaccessibility becomes a disabling consequence, particularly for those with chronic conditions who face unequal access to employment opportunities. However, as Casselman put it, “COVID-19 offered up so many accessibility opportunities,” including in the workplace. The mass adoption of remote and in-person hybrid models of work was initially put in place to encourage employees to stay home if they felt sick. But now, working from home is more commonplace. Younis explained that she has the option to work from home or to go into the downtown office, providing adaptability for days when she feels unwell. Flexible work options show how inclusive policies can make workplaces more accessible for individuals with impairments.

The COVID-19 pandemic has had profound impacts on society, and we will feel its implications for generations to come. The long-term damage to our mental and physical health is undeniable. However, a less expected outcome of the pandemic has been a change in public awareness of how infections spread and the shared responsibility we have to keep each other healthy. Even though the WHO declared the pandemic over in 2023,⁴ practices implemented during COVID-19 to prevent the spread of infectious diseases are still in place today. From mask-wearing to enhanced sanitation protocols, many of these measures have become a lasting part of daily life to reduce the spread of the flu, colds, and other infections. These measures create a more accessible environment for those with autoimmune conditions, who must always be attentive to their health. The prevalence of autoimmune conditions has not changed as a product of COVID-19; however, changing social conditions that favour accessibility means autoimmune impairments may become less disabling, and our world becomes more inclusive.

References

1. Cobb S, Anderson F, Bauer W. Length of life and cause of death in rheumatoid arthritis. N Engl J Med. 1953; 249(14):553-556.

2. Union of the Physically Impaired Against Segregation and the Disability Alliance. Policy statement [pamphlet]. London (UK); 1976.

3. Boseley, S. Hydroxychloroquine: Trump’s Covid-19 ‘cure’ increases deaths, global study finds. The Guardian. 2020. Medical Research. Available from https://www.theguardian.com/science/2020/may/22/hydroxychloroquine-trumps-covid-19-cure-increases-deaths-global-study-finds

4. UN News. WHO chief declares end to COVID-19 as a global health emergency; 2023 [cited 2025 February 4]. Available from https://news.un.org/en/story/2023/05/1136367