Kristy Dickinson woke up on a recent Monday unable to move her body. The delay waiting for medication and a heating pad to kick in threw off her morning routine and a flare-up of gastrointestinal symptoms forced her to reschedule back-to-back work meetings. She wasn’t able to get her work done until later in the evening, after putting her three kids to bed.

This is the reality of living with a rare genetic disease that impacts Dickinson’s connective tissues and several co-morbidities including an autoimmune disease called ankylosing spondylitis. She juggles health-care appointments across three hospital jurisdictions and 11 different specialists, all while meeting family commitments as a mother of three and contributing at work.

But that complexity is invisible to anyone who doesn’t know Dickinson, who is the founder and chief executive officer of Chronically Simple. “I’m sure that seeing me today, you would have no idea how medically complex I am. When you look at me you see a normal 45-year-old woman. [But] my conditions impact my life in unexpected ways,” she said during Benefits Canada’s 2022 Chronic Disease at Work conference in February.

Read: Plan sponsors, members want more benefits plan support for chronic conditions: survey

According to the 2020 Sanofi Canada Healthcare Survey, 70 per cent of Canadian employees live with at least one chronic condition with chronic pain and 50 per cent is caring for a loved one who’s managing a chronic illness.

Many people in these positions are uncomfortable being open with their employers out of fear of being considered a burden, being pitied or being identified by their diagnosis, due to concerns their health condition could potentially impact their profession, she said.

Employers need to be cognizant of caregiver burnout, said Dickinson. On average, caregivers spend an additional 29 hours per week caring for their loved ones on top of a full workweek, according to Sanofi Canada’s 2020 survey. And the Ontario Caregiving Association found 58 per cent of Canada’s 7.8 million caregivers say they’re burnt out, while 52 per cent said balancing work and caregiving has become more challenging during the coronavirus pandemic.

Read: How to support working caregivers

“Caring for someone who’s living with an illness or a disability can oftentimes feel like a full-time job. When you add in the recent global pandemic and the impact the past two years have had on those who are trying to juggle family responsibilities, . . . full-time employment and worrying about what might happen if they or someone they love contracts COVID, it’s a lot. Your employees look fine on the surface, but they’re paddling very fast to keep themselves afloat.” 

It would be wrong to assume this burnout has no impact on employee productivity, she said, noting caregivers often only alert their employers to their situation at home when they were dealing with a crisis.

So how can plan sponsors support employees before they reach that point? Dickinson said providing flexible scheduling can allow caregivers and people living with chronic diseases to more conveniently schedule and work around their health-care appointments. Access to a virtual-care platform can also allow patients to quickly address any immediate health concerns with a primary physician or even connect with specialists in their disease. She also touted the benefits of paramedical coverage for providers that can help patients manage chronic pain, as well as a robust employee assistance program that can connect patients and caregivers to mental-health professionals.

Read: Remote working helping employees with chronic conditions miss less work: survey

Managing a chronic disease often involves juggling numerous appointments and medications, added Dickinson, something that employees can more conveniently manage with an app like Chronically Simple. The app, which Dickinson initially created after struggling with managing her own disease, helps reduce patients’ administrative burden and is shareable so their caregivers can also access it.

“There are many comprehensive resources available for employers to share with their employees, but the first part is understanding and acknowledging the issues that are impacting your workforce. As employers, we have an opportunity to allow our employees to give the best to our organization while also supporting them in our personal lives.”

Read more coverage of the 2022 Chronic Disease at Work conference.