But You Don’t Look Sick
How invisible illness can impact work dynamics.
Posted September 30, 2022 | Reviewed by Davia Sills
- Characterizations of disability remain steeped in imagery of a wheelchair, despite nearly 80 percent of disabilities being "invisible."
- What managers and colleagues see at work may not be a true reflection of how you feel, and sitting in silos can leave us feeling isolated.
- Declaring an "invisible" disability can seem like an impossible choice between getting support and facing discrimination.
You’re a high-flier, a go-getter, and a mover and shaker, but you’re in pain… Exhausted. Stressed. Foggy. Anxious. Despondent, with rare sensitivities. One (or more) of your organs aren’t cooperating… But you don’t look sick!
What managers and colleagues see is not a true reflection of how you feel—be it physically or psychologically. The “suited and booted” you is a camouflage that can develop into an emotional oxymoron (Goldberg, 2021)—with the occasional temptation to pull a face (or a bodily slump) that gestures stereotypical unwellness to muster a little empathy.
The alternative is to be nonchalant in defiance, screaming indifference to what anyone and everyone thinks. And yet, as humans, we thrive on shared experiences (Brewer, 2007)—we want people to see what we see and feel what we feel. We want to be heard. We want our reality to be their reality.
This is no different within the occupational milieu (Fine, 1986). Without this validation, we are often left frustrated and disconnected, with fraudulent feelings that lead to an unnecessary desire to explain ourselves. Or we hide the authentic experiences that can leave us feeling isolated, on a downward trajectory of sadness to despair.
Beyond the Wheelchair
The World Health Organization estimates an excess of 1 billion people are disabled, which corresponds to circa 15 percent of the global populace (WHO, 2022b). Still, the concept of disability remains steeped in the clichéd imagery of a wheelchair, despite only 2 percent of disabled people being wheelchair-bound (Lise, 2021). Even the word “disabled” has been stigmatized, with many who definitionally met the criteria for disability rejecting the term or having the view that they are not “disabled enough” because they do not fit the stereotypical disability archetype.
Moreover, up to 80 percent of disabilities are unseen—not immediately discernible to the untrained eye—or, as commonly referred to, invisible (Lise, 2021). But this invisibility is far from a superpower! In fact, non-visible disabilities, such as cancers, neurological (e.g., epilepsy), allergenic (e.g., eczema), endocrinal (e.g., diabetes), musculoskeletal (e.g., fibromyalgia), and hematological disorders (e.g., sickle cell), are often widely misunderstood. The elusiveness that shrouds them can reduce social support and validation, and their long-term nature can lead to compassion fatigue in others (Brennan & Creaven, 2016).
The state of affairs is arguably worse for those with mental illness due to the added, unwarranted stigma that often makes those afflicted more prone to concealing what already cannot be seen. This conscious attempt to hide one’s daily reality is an added burden on mental health.
Although it is the least declared form of illness, GlaxoSmithKline places mental illness as the third most common occupational illness that accounts for half of all sickness absence, double that of physical illness (GlaxoSmithKline, 2003). Because of this concealment, we often fail to understand the instances when such illness may underly changes in behaviors, poor performance, misconduct, or bad relationships with colleagues (Davies & Lewis, 2008). Because of this concealment, we often fail to offer support and reasonable adjustment that could have a huge impact on the afflicted person’s well-being, contribution, and identity at work.
Clash of the Titans
Unseen illness can influence the way people see us and our perception of them, such that workplace relationships can be enflamed (Clair et al., 2005; Vickers, 2000). On one hand, it can provoke flippant snubs to be thrown about the office—“drama-queen,” “prima donna,” “attention-seeker”—while being discounted as lazy or weird. We’ve heard it before, thought it (if we’re honest), and perhaps even said it. On the other hand, the receiver of these insults will likely see others as being insensitive, mean, and spiteful. Neither may be an accurate depiction of the individuals involved, but still, through this process, the unwell person can become gradually alienated over time, ladened with feelings of guilt and shame (Razzaghian & Shah, 2011).
This exchange of not believing and not being believed, and the constant pressure to legitimize the condition, can cause resentment, detachment, and diminished trust between collaborators. As a result, team cohesiveness and efficacy are often adversely impacted, with joint strategies avoided or abandoned, intercommunications limited or negated, and morale lessened for all involved (De Jong et al., 2016).
To Tell or Not to Tell
One leading diversity talent think tank report by Bloomberg, PwC, and Unilever documented that 30 percent of professional workers had a disability, but only 3.2 percent of those were declared (LIME, 2022). Declaring what one could reasonably hide is a difficult decision that many have to face. It’s a balancing act between getting support and facing discrimination and can feel like an impossible fear-based choice.
Removing that cloak of invisibility raises common questions like, “Will I be hired?” “Judged?” “Mocked?” “Treated with kid gloves?” “Overlooked for promotion?” “Will I lose credibility?” “Will my manager think I cannot cope with more responsibility?” Disclosure is a risk, but so is the veil of secrecy. Personal censorship can be emotionally draining and socially isolating, with gains from reasonable adjustments squandered.
Out of Office, Not Absent
While there is a movement toward flexibility, with laws protecting absence for illness, absenteeism continues to be a major concern for employees and employers alike and is often a proverbial broken step (or two or three) on the career ladder (Burnford, 2019; NICE, 2015). Between appointments and an inability to get out of bed some mornings, the amount of time spent away from the office can quickly mount.
The social and economic costs of ill-health are staggeringly high (Marquez, 2015), measured in terms of labor supply losses, disability costs, high rates of unemployment, absenteeism, and presenteeism that can manifest through reduced productivity. Yet this can be managed through flexible working time directives and remote working options that allow for more seamless management of priorities, unrestricted to the 9-5.
Here are five recommendations to reduce the burden of unseen illness in the workplace:
- Less obvious than opening the door for someone in a wheelchair is knowing how to support colleagues without aids signaling a need. Be aware of those around you and sensitive to changes in their demeanor. Notice the quiet moments when colleagues appear withdrawn, secluded, or tired. Take a genuine interest. Offer a listening ear over a coffee. This is endearing and will foster reciprocity in kind. Invariably, boundaries are necessary, and this should occur without sacrificing your own well-being. However, awareness and compassion can go a long way to building strong working relationships and establishing lasting networks that can fortify your own career trajectory.
- Position yourself as a leader and ally. Take an active interest in your colleagues’ work, and discuss their wins and struggles while being transparent about your own. Beyond encouragement, offer to collaborate on projects and advocate for them in the presence of others. These empowering acts set you apart as a trustworthy ally with authority and influence, and they also indicate respect for their expertise and elevate their value in the team.
- We are complex beings treading a thin line between health and disease, yet we tend not to consider illness until illness considers us. Uncover your blind spots in an act of self-reflection. Are you judging a colleague at a standard at which you yourself are willing to be judged? Consider how you would want to be treated and the accommodations that you hope would be available to you when faced with illness. Then informally communicate these with management, which will demonstrate your commitment to inclusion and position yourself as a forward thinker.
- Legitimize, don’t trivialize, people’s illness. Offhanded comments might be personally amusing at the moment, but they only make you look bad and make the target feel bad. Keep in mind the personal and professional sacrifice that you may face through accusations of intimidation, harassment, and discrimination. After all, occupational grievances can be cataclysmic to your career. In this instance, silence can be magical!
- Empower people in their illness by treating the condition as you would someone who wears glasses—matter of factly—it is an everyday issue that must be attended to. With the appropriate adaptation, it is manageable and is not central to the effective fulfillment of the role. When we start to treat disability in this way, we remove the stigma and make disclosure a no-brainer.
Ader, R., & Cohen, N. (1975). Behaviorally Conditioned Immunosuppression: Psychosomatic Medicine, 37(4), 333–340. https://doi.org/10.1097/00006842-197507000-00007
Arroll, M. A. (2014). Invisible Illness: Coping with misunderstood conditions. SPCK.
Brennan, K. A. M., & Creaven, A.-M. (2016). Living with invisible illness: Social support experiences of individuals with systemic lupus erythematosus | SpringerLink. https://link.springer.com/article/10.1007/s11136-015-1151-z
Brewer, M. B. (2007). The importance of being we: Human nature and intergroup relations. American Psychologist, 62(8), 728–738. https://doi.org/10.1037/0003-066X.62.8.728
Burnford, J. (2019). Flexible Working: The Way Of The Future. https://www.forbes.com/sites/joyburnford/2019/05/28/flexible-working-th…
Clair, J. A., Beatty, J. E., & Maclean, T. L. (2005). Out of Sight But Not Out of Mind: Managing Invisible Social Identities in the Workplace. Academy of Management Review, 30(1), 78–95. https://doi.org/10.5465/amr.2005.15281431
Davies, L., & Lewis, J. (2008). The invisible illness—ProQuest. https://www.proquest.com/docview/207325578?fromopenview=true&pq-origsit…
De Jong, B. A., Dirks, K. T., & Gillespie, N. (2016). Trust and team performance: A meta-analysis of main effects, moderators, and covariates. Journal of Applied Psychology, 101(8), 1134–1150. https://doi.org/10.1037/apl0000110
Fine, G. A. (1986). Friendships in the Work Place. In V. J. Derlega & B. A. Winstead (Eds.), Friendship and Social Interaction(pp. 185–206). Springer. https://doi.org/10.1007/978-1-4612-4880-4_10
Glaxosmithkline. (2003). Glaxosmithkline plc—EHS Report—2003. Yumpu.Com. https://www.yumpu.com/en/document/read/407849/glaxosmithkline-plc-ehs-r…
Goldberg, S. (2021). Invisible Illness. J19: The Journal of Nineteenth-Century Americanists, 9(1), 121–128. https://doi.org/10.1353/jnc.2021.0014
Hamilton, O. S. (2021). Beneath the Skin: The Problems Chronic Stress Can Cause | Psychology Today United Kingdom. Psychology Today. https://www.psychologytoday.com/gb/blog/the-bridge/202112/beneath-the-s…
LIME. (2022). Center for Talent Innovation’s 2017 Disabilities and Inclusion Report. https://www.limeconnect.com/opportunities_news/detail/center-for-talent…
Lise. (2021, August 6). Invisible Disabilities: 80% of Disabled People Are Concerned! Inclusive City Maker. https://www.inclusivecitymaker.com/invisible-disabilities-80-of-disable…
Lorentz, M. (2006). Stress and Psychoneuroimmunology: 11, 11.
Marquez, P. V. (2015). Shining a light on mental illness: An “invisible disability”. https://doi.org/10.13140/RG.2.1.4438.4086
NICE, N. I. F. H. A. C. E. (2015). Workplace health: Support for employees with disabilities and long-term conditions.
Razzaghian, M., & Shah, A. (2011). Prevalence, Antecedents, and Effects of Workplace Bullying: A Review (SSRN Scholarly Paper No. 1983410). https://papers.ssrn.com/abstract=1983410
Vickers, M. H. (2000). Stigma, Work, and “Unseen” Illness: A Case and Notes to Enhance Understanding. https://journals.sagepub.com/doi/abs/10.1177/105413730000800203?casa_to…
WHO, W. H. O. (2022a). Disability. https://www.who.int/health-topics/disability#tab=tab_1
WHO, W. H. O. (2022b). Disability and health. https://www.who.int/news-room/fact-sheets/detail/disability-and-health