Seen and Believed, Part 1: How Invisible Illness Keeps Autoimmune Disease in the Workplace Shadows
Updated: 1 day ago
When Lelainia Lloyd, an Ambassador with the MS Society of Canada, filled out her volunteer application for the 2010 Vancouver Winter Olympics, she had the opportunity to disclose that she had a disability, but she chose not to. It is just one of the many human factors that keep her autoimmune conditions in the shadows.
Living with neuromyelitis optica (NMO), a rare autoimmune disease in which the immune system attacks the spinal cord and optic nerve, as well as inflammatory arthritis, Lelainia has shared the realities of life with illnesses that cannot be seen (1). As Invisible Disabilities Week shines a light on conditions like hers, her story shows what it costs to live, and to work, with an illness that looks like nothing at all.
The vicious cycle behind the secret
Lelainia’s decision is far from unusual. It is part of a pattern that Dr. Adam Buntzman, Scientific Advisory Board Member at Praespero, sees across autoimmune disease.
“Autoimmune diseases are frequently invisible, chronic, and ambiguous,” said Dr. Buntzman, who also has suffered from autoimmune conditions. “This translates into the discomforts of life with autoimmune disease, which keeps the issue in the shadows even while prevalence is growing.”
Dr. Buntzman points to Crohn’s disease and inflammatory bowel disease (IBD) as one example.
“You can’t leave the house,” he said. “You can’t leave 10 feet away from a toilet, and it’s embarrassing.” For people with scleroderma and other autoimmune skin diseases, he noted, being seen in public is something many would rather avoid. Then there is rheumatoid arthritis. “Rheumatoid arthritis makes it difficult to even move, much less go to the store or participate in commerce, or the workforce,” he said. “Your joints are malformed.”
The result is a cycle he describes plainly. “Because of the pain or embarrassment factor, people suffering from autoimmunity often ‘hide,’ which only increases the problem of non-visibility,” said Dr. Buntzman. “Secret suffering is the axle of this vicious cycle of low awareness.”
"Secret suffering is the axle of this vicious cycle of low awareness" - Dr. Adam Buntzman, Praespero
It is also a harder story to tell. “Unlike diseases or conditions with more visible disabilities, autoimmune disease is more philosophically complex: the body attacking itself,” he said. “That is a harder story to tell, and perhaps a more uncomfortable one.”
People living with invisible autoimmune and related chronic conditions, such as lupus, rheumatoid arthritis, fibromyalgia, Crohn’s disease and multiple sclerosis, face severe daily challenges at work precisely because their suffering is hidden from view.
The same silence reaches the laboratory. More than 100 autoimmune conditions are usually discussed one disease at a time, so the full scale of autoimmunity rarely comes into view. When a problem is quiet, urgency fades, and funding fades with it.
"Unlike diseases or conditions with more visible disabilities, autoimmune disease is more philosophically complex: the body attacking itself. That is a harder story to tell, and perhaps a more uncomfortable one."
A lifetime dream and a private choice
NMO has left Lelainia with permanent numbness in her arms and hands and affects her sense of where her body is in space. Her inflammatory arthritis brings excruciating joint pain, and she lives with chronic pain from both conditions. Rehearsals for the ceremonies meant charging up and down numerous flights of stairs, again and again, while she was recovering from several months of chemotherapy. “I had to concentrate hard to avoid falling down the stairs and by the time I got home each night, I was utterly exhausted,” she said. No one around her suspected how difficult that month and a half was.
Lelainia noted that appearances can mislead. “To a casual observer, I look like a reasonably healthy, able-bodied person, but looks can be deceiving and in reality, nothing could be further from the truth.”
“To a casual observer, I look like a reasonably healthy, able-bodied person, but looks can be deceiving and in reality, nothing could be further from the truth.”
Her conditions also change from week to week. When her NMO or arthritis flares, she needs steroid treatment, which can bring migraines, blurred or double vision and a need for a white cane. At other times a walking cane helps when her knees hurt or her legs feel unsteady. “My level of disability can change from day to day or week to week,” she explained. Neighbours who see her at the bus stop with a white cane one week and behind the wheel the next, she says, are surely wondering how the “blind woman” is driving.
This is how doubt takes root. Needs that appear and disappear invite onlookers to conclude that nothing is really wrong, and with each flare the work of being believed begins again.
What presenteeism costs
Lelainia’s weeks of rehearsal are an extreme version of something many workers with hidden illness do daily: show up, push through and hide the cost. Researchers call this presenteeism, meaning being at work but unable to perform at full capacity because of illness, pain or stress. Because it never appears in attendance records, employers rarely see it, yet it can cost more than absence.
 | Manulife’s 2022 Wellness Report found that Canadian employees lost an average of 48.1 days to health-related absence and presenteeism combined, up from 41.2 days in 2021 (4). A Conference Board of Canada health expert has called presenteeism possibly a larger concern than absenteeism, citing one study that put its cost at as much as 32 times higher (5). Autoimmune conditions add to the bill. One US analysis estimated US$580,000 in excess and potentially avoidable healthcare costs and lost work time for every 1,000 employees, linked to just five autoimmune conditions (6). The pressure to look well carries a personal cost too, since working through flares can worsen symptoms and lead to burnout (7). |
How autoimmune patients can self-advocate at work
Decide what to share, and when. Disclosure is a personal choice, and Lelainia’s hesitation is one many people will recognize. Some describe the support they need, such as flexible hours or an ergonomic keyboard, without naming a diagnosis (7).
Make specific requests, in writing. Flexible start times, remote days, adaptive equipment and short breaks are common asks. Canadian human rights law generally requires employers to accommodate disability up to the point of undue hardship.
Explain that ability can change. Lelainia’s needs shift from week to week. Telling your manager this early helps a good day avoid being read as proof that a bad day was exaggerated.
Pace yourself and protect your boundaries. Working through pain is not a measure of commitment. Put the most important tasks first, take your breaks and say no when you are at your limit (7).
Know your benefits before a flare. Review health coverage and short-term and long-term disability options in advance (7).
Find your people. Lelainia credits connecting with others who live with similar health challenges for helping her grow into an advocate.
What colleagues can do to be more supportive
Believe first. Looking well does not mean feeling well, and what you see on one day is not the whole picture.
Expect change without suspicion. A cane one week and a car the next is how flares work, not evidence of exaggeration.
Ask “What would help?” Offer support without asking for a diagnosis or medical details.
Skip the unsolicited cures. Suggestions about diet, yoga or sleep can sound like doubt, however kindly meant.
Make rest respectable. Do not celebrate working through illness. Take breaks and use flexible options yourself so that others feel able to as well.
Keep learning. Invisible illness is easier to support once you know what it can look like.
Making the invisible visible
In Part 2 of this series, “Seen and Believed, Part 2: What Lupus and Hashimotos Reveals About Invisible Illness at Work,” we will look at what researchers heard from six people living with lupus, and what managers can do about it.
Breaking this cycle takes understanding at the desk and discovery at the bench. Praespero funds bold, collaborative research that looks for the root causes of autoimmune disease, because understanding why the immune system loses its balance is the surest path to prevention and cures, not only symptom management.
“Sharing our stories is how we become less invisible,” said Lelainia.
Together, we can accelerate the science to end autoimmune disease. Share this post with a colleague, a manager or a friend, and consider supporting boundary-breaking research at Praespero.org.
Donate to Praespero here.
References
Lloyd L. Now you see me, now you don’t: my life with invisible disabilities [Internet]. Richmond (BC): Rick Hansen Foundation; 2018 Mar 5 [cited 2026 Oct 19]. Available from: https://www.rickhansen.com/news-stories/blog/now-you-see-me-now-you-dont-my-life-invisible-disabilities
Statistics Canada. Accessibility in Canada: results from the 2022 Canadian Survey on Disability. The Daily [Internet]. 2024 May 28 [cited 2026 Oct 19]. Available from: https://www150.statcan.gc.ca/n1/daily-quotidien/240528/dq240528b-eng.htm
Statistics Canada. Labour market characteristics of persons with and without disabilities, 2024. The Daily [Internet]. 2025 May 14 [cited 2026 Oct 19]. Available from: https://www150.statcan.gc.ca/n1/daily-quotidien/250514/dq250514b-eng.htm
Wellness report finds employees lose 48 days each year to absence and presenteeism [Internet]. Insurance Portal; [cited 2026 Oct 19]. Available from: https://insurance-portal.ca/article/wellness-report-finds-employees-lose-48-days-each-year-to-absence-and-presenteeism
Chronic disease raising “alarm bells.” HR Reporter [Internet]. [cited 2026 Oct 19]. Available from: https://www.hrreporter.com/news/hr-news/chronic-disease-raising-alarm-bells/313403
Integrated Benefits Institute. Autoimmune conditions. IBI HPICC series, report 07 [Internet]. [cited 2026 Oct 19]. Available from: https://8926463.fs1.hubspotusercontent-na1.net/hubfs/8926463/Resource%20Assets/Articles/IBI-HPICC-Series-Report-07-Autoimmune-Conditions.pdf
Sundermeyer Z. Autoimmune disorders & invisible illness in the workplace. Infusion Health [Internet]. 2026 Jul 27 [cited 2026 Oct 19]. Available from: https://infusionhealth.org/autoimmune-disorders/autoimmune-disorders-invisible-illness-in-the-workplace/
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