People’s reasons for disclosing an episodic disability linked to the support they receive

IWH study examines the link between reasons for disclosing a health condition and outcomes of disclosure

Published: February 2, 2021

Deciding whether to disclose a health condition to others at work is a complex and often fraught process for workers with episodic disabilities.

Many chronic mental and physical health conditions considered episodic are characterized by symptoms that come and go. Periods of good health are punctuated by episodes of unpredictable and disabling symptoms. These symptoms are often invisible, leaving people with these conditions with the choice of whether or not to disclose their health issues to others at work.

Many workers decide not to say anything at all. They try instead to get through episodes of ill health without asking for additional accommodations beyond what may be available to everyone, such as sick days or flex time.

At the Institute for Work & Health (IWH), research is underway to develop a tool to help people living with episodic conditions grapple with disclosure decisions. To provide the evidence base for the tool, IWH Senior Scientist and Scientific Co-Director Dr. Monique Gignac recently completed a study examining whether people’s reasons for disclosing or not mattered to the support they received at work. She recently shared her findings in an IWH Speaker Series webinar.

The study, published in February 2021 in the peer-reviewed Journal of Occupational Rehabilitation (doi:10.1007/s10926-020-09956-1), reaffirmed that people’s health needs and their perceptions of their workplace as supportive were among the most important factors for disclosing.

The study found other reasons for disclosing (or not) mattered as well. When people made decisions in pursuit of a positive outcome, they were significantly more likely to report more positive than negative outcomes at work—whether their decision was to disclose or not. The opposite was also true. When people made decisions primarily trying to avoid a negative outcome, they were more likely to report negative outcomes at work.

It wasn’t disclosing or not disclosing that mattered as much as the reasons why people were making their decision, says Gignac, lead investigator of a five-year partnership project called Accommodating and Communicating Episodic Disabilities (ACED). Workers are regularly trying to assess their situation, and it’s this dynamic environment that makes decision-making complex and so important to workers living with episodic disabilities.

Approaching or avoiding

To conduct the study, the research team recruited 900 working people across Canada to complete an online survey. All had an episodic disability; half had shared that fact with their supervisor or manager while the other half hadn’t.

Participants were asked about their work: how long they had been with their employer, how much stress they experienced at work, how supportive they found their workplace, how much accommodation they needed to do the job, and so on. They were also asked to check off all the reasons for disclosing or not disclosing that applied to them (see sidebar).

Tapping into research on communication decisions in the field of psychology, the team grouped these reasons into two categories. "Approach goals" are those where an individual is trying to pursue a positive outcome—for example, getting more support, building trust in a relationship or being able to maintain high performance in a job. "Avoidance goals" are those where an individual is trying to avoid negative consequences—for example, losing a promotion opportunity or being the subject of gossip.

Study participants were also asked about the positive or negative consequences they experienced at work related to disclosing or not disclosing their health conditions (examples also listed in sidebar).

We wanted to take a look at the range of reasons people give for sharing or not sharing and make the link to workplace support outcomes, says Gignac. In other words, when people tell us why they said or didn’t say something about their health condition at work, can we gain insights into whether they reported it was a good or bad decision for them? Was it related to a positive or negative outcome with respect to support at work?

When the team looked at the two groups of reasons—approach and avoidance—it found a statistically significant pattern. Regardless of whether or not workers disclosed, having more avoidance goals was significantly associated with reporting negative support outcomes at work. For example, some participants might have disclosed because co-workers noticed something wrong and they had to explain, or some might have kept the condition to themselves because they didn’t want people gossiping. Both types of reasons were related to more negative outcomes.

On the other hand, when people said they were pursuing approach goals, like improving a relationship with others or continuing as they are because they are already managing well at work without others knowing about their condition, they reported significantly more positive workplace outcomes.

The team also found a couple of other notable patterns. One was that women were less likely than men to say they had positive outcomes when they disclosed a health condition at work. A second was that people with mental health conditions were no less likely to report positive outcomes when they disclosed than people with physical health conditions. However, they were more likely to report negative outcomes when they did not share health information with their supervisor.

Our team has conducted additional research into this finding, and we have learned that sometimes individuals with mental health conditions struggled with work attendance, workplace relationships or meeting job demands, says Gignac. Not disclosing any information sometimes meant that mental health difficulties were misinterpreted as poor work habits and malingering.

Gignac notes that it makes intuitive sense that people’s reasons for disclosure or non-disclosure would matter to the work outcomes they experience. People’s reasons for saying something or not may accurately reflect their reading of their work environment as being supportive or not, says Gignac.

We need to better understand some of the consequences of people sharing or not sharing information. A better understanding would help people decide whether to ask for support, and who, when and how to get support even when someone wants their health to remain confidential.

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