Color & Control:

Episodic health conditions

By Monique Gignac

When I give presentations on chronic conditions and their impact on work, one question comes up again and again: “Should I tell my employer I have a chronic condition that sometimes makes it hard to work?”

The answer to that question is not a simple “Yes” or “No”. Nor is it something that people grapple with just once. People make that decision repeatedly throughout their careers. And the reasons why they tell their workplace or not can vary with the stage of their career, their job status (such as working part time), the relationship they have with their managers and co-workers, and their organization’s policies and practices. Needless to say, the decision is complex and can bring a lot of stress each time it comes up.

There is no simple right or wrong answer. But that is not to say that these are all subjective decisions and that a person’s reasons do not matter. At the Institute for Work & Health, I have been working with a team of researchers on a project to develop a research-based decision-making tool. In one of the studies that we conducted to support the tool’s evidence base, we explored whether people’s reasons for disclosing matter to the support they get, the way people view them at work, their perceptions about future opportunities or job security at work, and a range of other consequences.

The results of this study, in the peer-reviewed Journal of Occupational Rehabilitation, reaffirmed that people’s health needs do matter when people consider whether they should share their health condition at work. So do people’s perceptions of the level of support they receive at their workplace. In addition, we learned that people’s reasons—whether they are seeking something like an improved relationship or avoiding something like a negative impact on their career—matter as well.

What are episodic disabilities

Many of the more common health conditions Canadians live with can be considered “episodic” conditions. Some examples include depression, anxiety disorders, multiple sclerosis, arthritis, diabetes, HIV/AIDS, Crohn’s, colitis, hepatitis C, chronic fatigue syndrome, migraines and some forms of cancer. These are conditions with symptoms that come and go. People can go for a long time without any limitations on their daily activities, but episodes or flares can return with severe and sometimes disabling symptoms. Even when their health conditions are well managed by treatments, people can find these episodes or flares unpredictable in their intensity and duration. Because of the recurrent and unpredictable nature of these conditions, and because they are often invisible or hidden to others, people living with these conditions can often choose whether or not to disclose their health issues to others at work. Many can decide not to say anything at all. They can try to get through a period of ill health and do the best they can to meet work demands, sometimes using accommodations that may already be available to everyone, such as sick days or flex time.

Why people disclose or do not disclose

Research on this topic has identified two main factors driving decisions to disclose or not disclose: need and perceived support. People are more likely to share when they experience more pain, fatigue or other symptoms—i.e. when they have great need. They are also more likely to share if they work in a supportive workplace.

But we know from research that there are many other reasons besides these two. Some revolve around concepts such as identity, privacy and reputation. For our study, we drew up a list of reasons for disclosing and for not disclosing. Some examples are outlined below:

Reasons for disclosing
• “It’s part of who I am. Telling people about my condition is not a big deal.”
• “I had to explain why I was absent so often.”
• “I felt my job was secure and it was safe to discuss.”
• “Others noticed changes in my behaviour and asked if there was a problem.”
• “My health was getting worse and I needed to say something.”
• “Others at my workplace had discussed their personal needs, and the response was positive.”

Reasons for not disclosing
• “I can manage at work without others knowing.”
• “I was concerned about losing a chance to be promoted.”
• “Nothing can be done so there’s no point in discussing.”
• “I’ve had problems in the past when I disclosed, so I don’t want to say anything.”
• “My health doesn’t affect my ability to do my job. So why say anything?”
• “It’s my business. People don’t have the right to know.”

In this study, we tapped into the study of communication decisions in the field of psychology, where researchers talk about two types of overarching goals. Outcomes that people pursue, hope for or seek out are called “approach goals.” Outcomes that people want to avoid or prevent from happening are called “avoidance goals.” Looking at the lists of reasons above, we found it helpful to group people’s reasons either as approach or avoidance goals.

We recruited nearly 900 workers from across Canada. All had an episodic condition, whether physical or mental. Half of the participants had shared information about their condition with their supervisor or manager while the other half had not. Using an online survey, we asked them about their work: how long they have been with an 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. We asked study participants to check off all the reasons that were important to them. We also asked about the consequences of their decisions.

Examples of outcomes following disclosure, both positive and negative, included:

• “There was greater understanding of my personal needs once I had disclosed.” (POSITIVE)
• “I didn’t need to hide who I really am from others at work.” (POSITIVE)
• “There was less stress at work.” (POSITIVE)
• “I have to spend more effort to prove I’m as good as others.” (NEGATIVE)
• “Others focus on my difficulties and not my skills and abilities.” (NEGATIVE)
• “I have experienced rejection or stigma.” (NEGATIVE) Examples of consequences of not disclosing included:
• “People see me more positively.” (POSITIVE)
• “People focus on my skills and abilities.” (POSITIVE)
• “Others don’t gossip about my personal situation.” (POSITIVE)
• “I’m more stressed.” (NEGATIVE)
• “I have to hide who I really am from others.” (NEGATIVE)
• “I have experienced rejection or stigma from others.” (NEGATIVE)

Analysis of people’s responses

We confirmed the importance of health needs in decision making (i.e. level of stress, need for accommodation, etc.) and workplace support. When people said they had high levels of stress, or when they felt little support at work, they were more likely to experience the negative outcomes listed above. This was the case for both the groups who disclosed and didn’t disclose.

When we looked at the two groups of reasons—the approach or avoidance goals—we also found they mattered. For both the people who disclosed and who did not share any information with a supervisor at work, having “avoidance goals” were significantly associated with negative outcomes. Some might have disclosed because co-workers noticed something wrong and they had to explain. Some might have kept the condition to themselves because they did not want people gossiping. Both these groups experienced more negative outcomes. On the other hand, when they made decisions in pursuit of something—that is, with an “approach” reason—their workplace support outcomes were significantly more positive.

Aside from these two main patterns, we should also highlight a couple of notable findings. One is that women were less likely than men to say they had positive outcomes when they disclosed their health condition at work. A second is people with mental health conditions were no less likely to disclose their conditions than people with physical health conditions—nor were they more or less likely to report positive outcomes when they disclosed. However, they were more likely to report negative outcomes when they did not share health information with their supervisor. In conducting additional research into this, we have learned that sometimes not disclosing information means that health limitations at work can be misinterpreted as poor work habits and malingering.

In sum, workers living with chronic conditions causing episodic disabilities have different goals for disclosing. The more their goals aimed to avoid a negative outcome, the more likely they were to tell us they actually experienced a negative outcome in the form of a lack of support from their organization. And vice versa: the more their goals were in pursuit of a positive outcome, the more likely they were to experience a positive outcome. This pair of findings makes sense intuitively. People’s reasons for saying something or not may accurately reflect their reading of their work environment. In pursuing a goal, people may also introduce new information to others (or withhold important information). This can change the situation or alter how others perceive them. It is this dynamic and ever-changing situation that makes decision making complex and so important to workers living with episodic disabilities. It highlights the importance of creating decision making tools that can help workers make the decision that they feel is best for them—no matter whether they disclose or not.v

Dr. Monique Gignac is Senior Scientist and Scientific Co-Director at the Institute for Work & Health. She is also Project Director of Accommodating and Communicating About Episodic Disabilities (ACED), a five-year partnership project led by the Institute. The Institute for Work & Health is a not-for-profit, independent research organization focusing on work-related injury and disability prevention. To sign up for news on Institute research, tools and projects, please go to

This study has now been published in the Journal of Occupational Rehabilitation (doi:10.1007/s10926-020-09956-1).

Related Articles

Recent Articles

Complimentary Issue

If you would like to receive a free digital copy of this magazine enter your email.