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Juliet Mafua poses for a photo near her home in Toronto on Wednesday, April 10, 2024. After struggling to navigate her career while experiencing intense pain and undergoing surgeries related to uterine fibroids, Mafua created the online platform Gleemora to connect adults with chronic illness with “survivor mentors” who can provide support and wisdom. (Galit Rodan/The Globe and Mail)Galit Rodan/The Globe and Mail

In 2017, when Toronto-based communications consultant Juliet Mafua was working as an on-air presenter in Nigeria, she had to appear positive and energetic for the camera every day. But it became increasingly challenging for her to continue wearing a “mask of wellness,” as she calls it, when she started experiencing severe abdominal cramps, bleeding and back pain because of uterine fibroids. Despite being an award-winning sportscaster, she worried that sharing her health challenges would make her colleagues think she was unfit for her role. So, she kept silent and battled through her symptoms alone.

Ms. Mafua isn’t alone in feeling unsafe about disclosing a chronic illness in the workplace. According to a 2023 Statistics Canada report, 45 per cent of Canadians live with a major chronic disease, such as diabetes, heart disease, cancer or a mental health disorder. Yet less than half share that information with their supervisor, a 2021 report from the Institute for Work and Health revealed. Fears of being fired (despite legislation that protects workers against this), stigma and reputational damage that could affect career growth are some of the reasons people don’t disclose, according to the same study.

Employees are not obligated to share health information with their employers, but in some situations – for example, when additional flexibility, time off or special accommodations are needed – it becomes unavoidable. Navigating those conversations can be tricky.

“You’re wondering, ‘How vulnerable should I get? What would that look like as I open up?’” says Ms. Mafua, who has needed to undergo blood transfusions and two uterine surgeries, the most recent one in 2022 while working remotely in Toronto in a public relations role. “And sometimes, like in my case, when you open up to one or two people on your team, they are understanding, but then the wider company as a whole is not offering the support you need.”

For example, company policy allowed only two weeks off at full pay after her surgery, although she needed three to four weeks to recover. Since the alternative was halving her income by going on short-term disability leave – which she couldn’t afford – she returned to working full-time after two weeks while using a hot water bottle to dull her pain. Ms. Mafua says she wished she had asked for a graduated return-to-work plan, but she didn’t know how to advocate for herself at the time.

Open this photo in gallery:

Juliet Mafua poses for a photo near her home in Toronto on Wednesday, April 10, 2024. After struggling to navigate her career while experiencing intense pain and undergoing surgeries related to uterine fibroids, Mafua created the online platform Gleemora to connect adults with chronic illness with “survivor mentors” who can provide support and wisdom. (Galit Rodan/The Globe and Mail)Galit Rodan/The Globe and Mail

Feeling isolated throughout her uterine fibroids journey, Ms. Mafua connected with other survivors on online forums to discuss the physical and emotional hurdles she faced while working, which she realized were common. She also sought out stories of celebrities and leaders who thrived in their fields despite chronic illnesses.

“Learning from them and hearing them talk about it made me feel I wasn’t alone,” says Ms. Mafua, who moved to Canada in 2020. “I thought, I want to create something where people could find a mentor who had walked their path … someone they can look up to.”

She started working on creating a free web and mobile platform called Gleemora that connects professionals, and any adult with a chronic illness, to successful “survivor mentors” in Canada and abroad. Launching in May, more than 20 high-profile mentors – including seasoned corporate executives, a television host, a professional football player and Hollywood actor and reality TV star Malorie Bailey – will help people with their careers and personal lives through regular video or audio calls. Mentees will be matched based on diagnosis for the most relevant advice.

“Gleemora will help professionals navigate health conversations at work, whether it’s with direct reports or a C-suite team; manage the emotional side of things; and remove the stigma,” Ms. Mafua says. “The more people that come out and say, ‘I am a survivor and a successful person,’ the more it will remove the fears of employers and HR professionals that those with chronic illnesses are unfit to work.”

Ali Jawin, senior vice-president of marketing at U.S. software company Outreach – and a Gleemora mentor – is one of those people. She has been sharing her story publicly on LinkedIn and with her former company’s CEO since the early days of her Stage 1 colon cancer diagnosis. Diagnosed at the age of 36 in late 2022, Jawin had to go through two major surgeries within three months and use an ostomy bag between them.

Luckily, the company she worked for at the time was supportive, Ms. Jawin says. She had a month off after each surgery, worked only half days the week she returned and switched to working mostly remotely. Still, there were other hurdles she had to learn to navigate that she now wants to share with others in her situation.

“I think the hardest part is that you can’t talk about colon cancer without talking about poop, which makes it a lot more awkward,” Ms. Jawin says. “At first it was like, ‘How do I tell my CEO that I can’t return this week because I’d be tied to the toilet?’” But she says she realized she had to address it, so she went ahead and avoided getting graphic with the details.

Ms. Jawin says being clear on messaging from the start is important, as it sets expectations for how you continue from that point. While she recognizes everyone’s health situation and response to it will be different, she says she found solace in work. Consequently, through her actions and messaging, she conveyed to the company that she would continue being productive and efficient at work.

“I was very determined … I remember talking to one of my direct reports saying, ‘Listen, this deadline can’t slip because I can’t have anyone thinking that this didn’t happen because I got diagnosed with cancer,’” Ms. Jawin says.

Planning ahead – whether it’s with your team in preparation for time off or at a personal level for illness-related changes – is also helpful, she says. For example, since she was worried about accidents with her ostomy bag when going into the office, she would take steps such as ensuring she did a bag change in the morning and packing extra supplies in advance. She also chose to schedule when she took her pills, drank water and ate food to ensure she was maximizing her time at the office rather than having to visit the bathroom often.

Ms. Jawin says she couldn’t have succeeded without the advice of members of her professional network who reached out in response to her LinkedIn posts. “I can’t imagine how I would have done it had I not had those connections who stepped up to guide me. I really wanted to give back as a mentor,” Ms. Jawin says.

Employers can also step up, says Monique Gignac, scientific director at the Institute for Work and Health in Toronto. While there has been more awareness and training around chronic diseases at the HR level, she says there is a long way to go when it comes to equipping co-workers and some supervisors with the skills to handle them.

“One of the things employers can do is take more of a team approach. They need to make sure that everyone is on board and communicated with so they can work together to offer support,” Ms. Gignac says. “Workplaces need to recognize that at some point [health-related disruptions] are likely to happen, so they should create a culture that is more understanding of work-life balance.”

Companies can also create a culture of trust by not always requiring documented proof, responding quickly to information that is shared and treating the chronic illness as a disability support issue rather than a performance problem, she says. In most cases, she says employees can still manage their work, but in some, modifying the work or providing additional assistance can help.

In addition, Ms. Gignac recommends employers regularly communicate with their employees about illness-related policies and practices and consider providing income support when people aren’t able to work temporarily.

At the micro-level, they can give workers control over their day so they can complete critical tasks when they’re not tired or in pain, offer flex time or remote work options, and consider workspace accommodations.

“An ergonomically designed workstation that allows you to have the light you need, away from noise, has a good chair and keyboard, is close to a washroom if you need that – all of those kinds of things are important for a lot of physical and mental health conditions,” Ms. Gignac says.

Editor’s note: A previous version incorrectly stated in 2022 Juliet Mafua was working for a Toronto public relations firm. In fact, she was working remotely in Toronto in a public relations role, but not for a Toronto PR company.

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