Lupus, a chronic but “invisible” autoimmune disease with no cure, is a life-altering diagnosis that impacts all areas of patients’ lives, including their work performance.
But there’s plenty employers can do to support these employees and help them continue to thrive at work, said Leanne Mielczarek, executive director of Lupus Canada, during Benefits Canada’s 2022 Chronic Disease at Work conference.
Lupus affects every one in 1,000 Canadian women, men and children. While it can strike at any point in someone’s life, 80 per cent of patients develop lupus between ages 15 and 44. Nine in 10 patients are women, but Mielczarek said Lupus Canada is seeing more men and children being diagnosed with lupus.
Patients experience the disease as a constant state of fatigue with flu-like symptoms, she said, noting it can take up to seven years to diagnose lupus, meaning many patients are left without proper treatment and experience adverse effects to their overall health.
“People don’t understand the pain that someone is going through with lupus and, especially as the [time before] a diagnosis can be quite lengthy, people don’t understand what they’re feeling and what they’re going through. We call it the disease of 1,000 faces, so how it may present in one person can be completely different as to how it presents in another, which makes it more difficult to determine what the diagnosis is.”
Once diagnosed, patients can struggle to see in-demand rheumatologists and they may need to go through trial and error to determine the right treatment path. They’re often treated with a “cocktail” of medications to manage their disease, including drugs like prednisone and corticosteroids that weren’t originally developed for lupus and can have adverse long-term side-effects like potential bone loss, osteoporosis, excessive weight gain and fluid retention.
Many lupus patients also experience anxiety and depression due to the chronic nature of the disease and uncertainty around disease progression.
Lupus also has an impact on patients’ and family members’ work life and performance, said Mielczarek. According to a recent Lupus Canada study, 23 per cent of lupus patients had to be away from work more than 25 days per year due to their symptoms and 35 per cent experienced one to three flares — a period of several days to a number of weeks when symptoms worsen and patients feel ill — in a 12-month period. Forty-four per cent cited an impact on their daily lives, including the inability to care for themselves or their loved ones. Nearly half (47.7 per cent) of family members reported taking time off work to help care for someone living with lupus.
Support for employees living with lupus starts with accommodations, said Mielczarek, citing examples such as allowing them to work from home and offering flexible lunch times and breaks throughout the day to take medications. She also encouraged employers to be flexible and understanding about numerous medical appointments and to provide additional sick days to manage flare-ups. She added that ultraviolet lighting can be harmful to someone living with lupus.
Employers can also ensure staff living with lupus understand all human resources policies and keep the lines of communication open.
She also highlighted the value of comprehensive benefits to support patients’ ongoing care, including coverage for medications, alternative treatment options like physiotherapy and chiropractic care, coverage for psychologists or other mental-health practitioners and an employee wellness program.
“We see the prevalence of lupus in the primary working years of a person, so we want to ensure that through access to treatment to different medications that someone can continue to be productive in those years.”
Lupus Canada’s study received comments from patients who described how much they valued their workplace benefits. One described drug coverage for their medications as a “godsend,” adding that “if I didn’t have workplace benefits, I wouldn’t be able to afford my medication.” Another said their physiotherapist, psychologist and massage therapy coverage “helped me greatly with my mental health and my depression related to having a chronic, debilitating condition like lupus.”
Read more coverage of the 2022 Chronic Disease at Work conference.