Consequences of Sharing Invisible Chronic Health Conditions at Work: Implications for Business Communication Education and Training

“Managing private health information is a salient issue at work because telling coworkers about an illness can garner needed support but can also be stigmatizing, which is a particular concern of those with chronic illnesses” (Westerman et al., 2015, p. 380). While some medical conditions are apparent upon sight, others are invisible, meaning that they are only known to coworkers if the afflicted employee chooses to share them. For individuals who have an invisible chronic illness, the dilemma of choosing whether to disclose their condition at work can span across their lifetime as they weigh the benefits of potential support or accommodations against the potential risks of discrimination and social stigma. As such, the experiences of individuals with invisible chronic illnesses, those who could have hidden their illness indefinitely but chose to disclose, can offer unique insight into the reality of workplace health disclosures. Specifically, the present study sought to identify whether individuals with invisible chronic illnesses who have chosen to disclose their condition have had negative experiences with that disclosure and to examine those experiences.

Communication privacy management theory (CPM; Petronio, 2002) explains how people choose to disclose or conceal their personal information. Disclosure of private information is governed by privacy boundaries constructed by the information owner. These boundaries separate public from private content. Individuals who have an invisible chronic illness have the autonomy to decide whether their health information should be private or public information as others are not aware of an illness without the information owners’ disclosure to at least one other individual. Like all information disclosers, the information owner expects that, if he or she shares personal information, the new information owner will follow the disclosure rules set for by the original owner (Petronio, 2002). (For example, if someone discloses their health condition to a coworker in confidence, they expect that coworker to keep their secret.) When these rules are not followed, however, the original information owner loses ownership of their personal information as it becomes public knowledge.

Individuals often hesitate to disclose their health information at work because they do not want to be discriminated against or judged (Vickers, 1997; Westerman et al., 2015). For example, Stewart et al. (2001) surveyed 378 breast cancer survivors about their workplace disclosure practices while they were undergoing cancer treatments. The authors found that 50% of participants disclosed at work to colleagues or their boss. Among these participants, 3% felt that they were unable to fulfill their job potential because they were discriminated against after their diagnosis. However, participants who disclosed their cancer diagnosis were overall more likely to continue working than those who did not. As such, choosing to disclose health information may provide the social support and/or understanding a person needs to be successful, but it also opens the door for judgment and discrimination.

Sometimes health information must be disclosed at work to explain coping or management techniques. Munir, Leka, and Griffiths (2005) found management of illness (for example, taking insulin injections at work) to be the greatest predictor of disclosing to coworkers. For individuals with short-term health conditions, the decision to disclose is temporal, but for individuals managing a condition across a lifetime, the decision to disclose is as chronic as their condition (Vickers, 1997).

The decision to disclose health information at work can be particularly difficult for individuals who have an invisible chronic illness. Vickers (1997) defines an invisible chronic illness as one that is “an ongoing condition; one which may be physical, emotional, judgmental, or cognitive; one that may not be curable… a condition that is not perceptible, not noticeable, not evident to others” (p. 241). Most research on health disclosure at work has focused on highly stigmatized health conditions. Infertility, IBS, mental health conditions, and HIV/AIDS are the most widely recognized stigmatized health conditions, all of which are invisible and chronic (Cline & McKenzie, 2000; Corrigan & Watson, 2002; Greil, 1991; Munir et al., 2005). People with stigmatized health conditions do not disclose their conditions at work for fear of being discriminated against or socially isolated (Joachim & Acorn, 2000; Vickers, 1997).

In 1997, Vickers called for increased research in the disclosure of chronic invisible illnesses at work when he noted that the presence of chronic invisible illness was on the rise in the United States. Based on the literature to date, Vickers (1997) was able to conclude that generally, chronically but undiscernibly ill individuals avoid disclosure to prevent being stigmatized or mistreated, but otherwise no further literature existed on the topic. Munir et al. answered Vickers’ call for more research in 2005 and concluded more specifically that the motivations not to disclose included potential discrimination, decrease in social support, and firing. To date, no other studies have focused on this unique but prevalent population.

Diversity training is a structured process that provides information for employees about how to react when they encounter diversity in the workplace (Dipboye & Colella, 2013). Diversity training teaches respect for diversity and how to respond to diversity in such a way that it does not create discomfort for any parties. The current literature on workplace and classroom diversity training has a strong emphasis on providing cultural, sex, generation, and gender training (e.g., Bendick, et al., 2001; Crews, North, Thompson, & 2001; Dipboye & Colella, 2013; Glenn, 2000, 2007; Kirby & Harter, 2001; Mobley & Payne, 1992; Rucker, 2007; Sue 1991). However, no literature could be found that discusses the need to train business students or employees on how to respond when a coworker discloses their health information. Given the lack of literature, perhaps there is no need for diversity training regarding health disclosures. Perhaps the fear of stigma is no longer a concern for people with the option not to disclose, as Munir et al. found in 2005. If this is true, then individuals with invisible chronic health conditions may no longer need to be concerned with the risk of being stigmatized in light of disclosing their condition to coworkers. Therefore, the following research question (RQ) will be addressed:

If there is indeed a need for diversity training in health disclosures, meaning individuals are experiencing negative reactions to disclosing their invisible chronic condition, it would be useful for developing training to know what the range of the negative reactions have been. Therefore, the following research question will be addressed:

Finally, if indeed there is a need for diversity training regarding health disclosure, it would be useful to identify whether there are particular occupations with prevalent issues or particular types of health conditions that are prevalently stigmatized against. As such, the following research question will be addressed:

University IRB approval for the questionnaire was obtained before loading the questionnaire to Qualtrics, which was the direct participant contact. Qualtrics is a survey distribution company that charges researchers per completed questionnaire and offers a monetary incentive to participants, typically less than $1 USD. From Qualtrics, participants received a link to an informed consent explaining the study as an attempt to understand how people communicate about their health at work. The consent form further explained that to be eligible to participate in this study, participants were required to be at least 18 years old, be currently employed, have “a non-visible or non-obvious disability, illness, impairment, or handicap,” and have disclosed that condition to at least one coworker. Qualtrics randomly disseminated the questionnaire to their subject pool across the United States, soliciting an acknowledgement that participants were willing to participate and that they met the criteria. After acknowledging consent and affirming that eligibility requirements were met, participants were directed to the online questionnaire. On average, participants needed 5 minutes to complete the questionnaire.

All participants (n=298) self-reported to have a chronic, invisible health condition. Participants were asked at the beginning of the questionnaire, “Have you ever had a colleague respond negatively to learning your condition?” Because of the relevance of this item to the research questions, participant demographics are summarized in Table 1, broken down into groups who had and had not experienced a negative response from a colleague as a result of their invisible chronic illness being revealed. Participants were asked to identify their invisible chronic illness categorically by musculoskeletal, neurological, mental, or other. They were also asked to specify their condition. Examples of mental conditions included anxiety, dyslexia, and depression. Examples of musculoskeletal conditions include degenerative bone disorders, arthritis, and carpel tunnel syndrome. Examples of neurological conditions include neuropathy, Guillain Barre, and Renaud’s. Examples of other conditions include hearing disorders, vision disorders, and asthma.

The questionnaire consisted of a combination of open-ended and closed-ended questions. Borrowing categories from the Invisible Disabilities Association (n.d.), participants were first asked whether mental, musculoskeletal, neurological, or other best described their condition and asked to specify the condition. They were then asked if they had ever experienced a negative reaction to disclosing their illness to a colleague and if so to describe the first incident in which a coworker negatively responded to their learning about their condition. Participants were asked to describe their first incident because while it was likely to be memorable, leaving the item open-ended to any incident was likely to garner responses specific to the worst incident. Therefore, asking about the first incident was more likely to result in data of a clear memory that represented a common negative response rather than an extreme incident. Finally, demographic information (i.e., sex, occupation, and age) was collected.

Research question one was addressed through a simple percentage. Research question two was addressed through thematic analysis (Miles & Huberman, 1994) of the item, “Please describe the first time that a colleague reacted negatively to learning about your condition.” Finally, to answer research question three, the themes generated from the thematic analysis were used as a coding scheme to complete a content analysis (Krippendorff, 1989). Researchers independently reviewed the data to identify whether identified themes were present within each response. Once both researchers independently coded the data, responses were compared. Next, eight logistic regressions were run (one per theme) to identify whether any of the themes were predicted by the collected demographic items. Results were computed as odd ratios for gender (men being the reference category), age, invisible chronic conditions (with none being the reference category), and the presence or absence of each occupation.

Research Question 1 asked which asked how common it is for someone with an invisible chronic health condition to have a negative experience when a coworker learns of their condition. Among the participants, 48.99% (n=146) had experienced a colleague responding negatively upon learning about their health condition at their present job. Table 1, which provides a summary of participant demographics, displays the demographics of participants who had experienced a negative consequence from having their health condition revealed.

Through the thematic analysis, researchers identified eight themes. Researchers first identified these themes through an independent review. Though their descriptors varied slightly during the independent review of the data, the researchers agreed upon eight themes and, ultimately, categorical names for those themes through a shared understanding. The themes are as follows.

Research question three asked whether any demographic items (i.e., participants’ sex, age, occupation, and category of invisible chronic illness) could predict how coworkers would respond negatively to participants. Inter-coder reliability for the content analysis was calculated using Cohen’s kappa (k=.95). Table 2 shows the percentage of respondents who identified with each theme. Notably, some responses represented more than one theme.

Results of logistic regressions predicting themes through demographic variables are displayed in Table 3. In four out of the eight themes, being a woman increased the probability that a coworker would react negatively to disclosure, although the only statistically significant result found was with the reaction of resentment. In this instance, being a woman made it 315% more likely that a coworker would respond negatively to disclosure. In all but one theme, getting older also increased the probability of coworkers responding negatively, although none of the results are statistically significant. Having a musculoskeletal condition increased the chances of negative responses for dismissive, faux pas, slander, resentment, and reduction of work, but the latter was the only statistically significant effect. Having a neurological condition increased the chances of negative reactions for disassociation, faux pas, bullying, and reduced work with no statistically significant predictors. With respect to mental conditions, dismissive, faux pas, bullying, and slander seem to increase the chances of negative reactions, although none of them are statistically significant. Having another condition also resulted in a statistically significant increase of resentment reactions.

Lastly, with respect to the occupations, working in the medical field dramatically increased the odds of experiencing disassociation and slightly increased the odds of experiencing bullying with a statistically significant probability, while being a sales professional statistically significantly predicted questioned ability. All in all, as an exploratory analysis, the results hint to the existence of systematic behaviors from coworkers when invisible chronic conditions are revealed that manifest differently through gender, age, and occupation. This is noteworthy considering the sample size and the fact that not all themes nor all conditions contained all occupations.

Most communication training happens within the college classroom, so it falls upon business communication educators to discuss diversity within the classroom. The results of this study indicate that there is a need for diversity training regarding the disclosure of health information. The data indicate that the training needs to be robust, covering topics from inappropriate accommodations (social faux pas) to anti-bullying. As such, data indicate that at a minimum, the following topics should be included in health diversity training for business communication students and on the job for employees: