On the Unseen Cost of Dis-Ease: What Chronic Illness Teaches Us About Leading with Compassion
Chronic illness reshapes how people present at work, engage with their families, and sustain themselves emotionally. Most organizations are still built on assumptions of bodily reliability and linear productivity as if everyone follows the same GPS: steady roads, predictable stops, and a straight path from the effort to output.
But living with chronic and degenerative illness and distressing diagnoses is not a detour, it is a different journey altogether. The road is uneven, often unpaved, and sometimes washed out without warning. You may be rerouted mid-meeting, stalled by fatigue, overcome by pain, or the need to adjust your position or location.
Chronic illness often begins in invisibility that prompts others to fill in the blanks. Fatigue or distraction mistaken for disinterest; pain misread as irritability; brain fog interpreted as forgetfulness; or physical adaptations branded as “weird.”
Unlike having a broken leg which comes with a cast and immediate sympathy, chronic conditions linger in the shadows until they disrupt what others expect of us. When presentations of “symptoms” become undeniable — missed deadlines, canceled plans, altered moods — the illness becomes “seen,” but often too late or too awkwardly.
In this situation, compassion at work must be skilled, not sentimental. Well-meaning colleagues might say, “Feel better soon,” as if this were a passing cold, not a permanent recalibration. Unlike some other afflictions, chronic illnesses do not resolve on a schedule.
So for those living with such chronic health conditions, like I have for decades, the challenge lies not only in the symptoms but also in managing the mismatch between external expectations and internal reality — at work, at home, and within one’s own sense of identity and performance.
If the workplace still expects everyone to arrive on time, use the same road, and pretend their journey is not more challenging, employees and precious talent will be lost.
But what happens when our body no longer cooperates?
How can managers support employees in these situations, and what can we all learn from those who must rearchitect their lives?
I learned early in my life that I had to move through the world with a different map. Along the way, I met some people who seemed impatient when I slowed down or unkind when I diverged from norms to just get through the day — but I also met a few remarkable guides who just walked with me, without needing to know the whole story. This post about what that journey has taught me, about work, leadership, and how we think of others.
Below the Water Line: Fragility and Productivity
Disease is part of life and the human condition. Chronic, genetic, and degenerative conditions are often invisible to others; can be progressive, episodic, or unpredictable; and require ongoing medical care, workplace flexibility, and emotional understanding. Perhaps most insidiously, they often come with stigma or disbelief — especially when symptoms are not outwardly visible. This invisibility leads many people to hide their diagnoses or downplay their needs, at the expense of their health, performance, and ability to connect to others.
These conditions affect millions of people: colleagues, managers, family members, and ourselves.
Neurological and neurodegenerative disorders such as Parkinson’s disease, multiple sclerosis (MS), epilepsy, ALS, and myasthenia gravis all impact how individuals move, speak, or think — and often unpredictably. MS alone affects roughly one million people in the United States, while epilepsy impacts over three million people.
Autoimmune and inflammatory diseases like rheumatoid arthritis, lupus, Crohn’s disease, and psoriatic arthritis are equally prevalent, with lupus affecting an estimated 1.5 million Americans and inflammatory bowel disease impacting around three million Americans. These conditions flare and recede, often without warning.
Genetic and connective tissue disorders like Ehlers-Danlos syndromes (1 in 5,000), Marfan syndrome, and Loeys-Dietz Syndrome (1 in 100,000) can cause not only chronic pain, musculoskeletal deformation, exhaustion, and functional instability, but also sudden cardiac or pulmonary events.
Sufferers of fibromyalgia (which affects an estimated four million people in the U.S.) and chronic fatigue syndrome (experienced by 3.3 million American adults) share some of these life experiences.
Endocrine and metabolic conditions — particularly diabetes and thyroid disorders — affect over 38 million and 20 million Americans, respectively.
Many patients or sufferers remain underdiagnosed or misunderstood, and mental health issues are frequent: clinical and epidemiologic evidence shows that the risk for depression is higher among those who suffer from chronic illnesses.
Add these up, and tens of millions of people in the U.S. alone (and their loved ones) are navigating the demands of work, family, and society with invisible limitations.
Off-Roading: Inflection Points and Identity Shifts
Many workers with invisible conditions carry two burdens: their own symptoms and the discomfort these symptoms cause themselves and others.
In our book, Compassionate Management of Mental Health in the Modern Workplace, we focused on how health challenges — especially chronic or acute illnesses — are critical personal inflection points.
Inflection points affect not just how individuals feel but also how they function in all areas of life. At work, they may struggle with energy, focus, and reliability. At home, they may become dependent, altering established family roles. And they might withdraw from society because the cost of engaging with others seems to outweigh the potential benefits of connecting with others.
Managers must recognize these moments not as isolated crises but as transitional phases requiring adaptive support — both emotional and structural. This does not mean lowering expectations but making appropriate accommodations. Put another way, managers here do not need to reduce standards but rather enable individuals to meet the standards and work expectations but perhaps in new ways — until the necessary work and business of the firm cannot be accomplished.
Inflection points often hold special power because they usually entail shifts in identity: very independent people may need to learn to ask for help, while the more resilient and stoic presenting individuals might need to show vulnerability. Caregivers become patients, providers need support, and high performers may need to downshift. These changes can cause shame, internal conflict, and silence — especially in workplaces that reward stoicism in leaders and managers.
Finally, health inflection points are entangled with other stressors — financial expenses, the strain of uncertainty, and grief around losing abilities and control and just dealing with change. For example, postpartum depression or long-term caregiving may go unacknowledged yet fundamentally affect workplace performance and family dynamics. Employees often mask these issues, which can lead to an increased emotional and physical toll.
When individuals fall ill, families, colleagues, and friends often absorb the fallout, which can be an additional burden on the employee struggling with illness. Their children and their partners will have to do more emotional and physical labor and may need to adjust their work schedules. In this context, managers should consider how support can expand beyond the individual to encompass their context and view the entire family as the caregiving unit.
The question then becomes, “How do we best go about it?”
When Instincts Take Over
The place to start is with ourselves. When confronted with an employee in distress, managers tend not to consult policy manuals immediately but instead rely on instinct, which is often based on their lived experiences, personalities, and fears. This can lead to jumping to conclusions.
Our book identified default animal archetypes in managerial responses when mental illness issues surface in persons or in teams. They apply just as clearly to chronic illness as they do to mental health.
Some default to the Ostrich, practicing benign ignorance. They keep their heads down, hoping the problem will resolve itself. Their discomfort with vulnerability leads them to avoid conversations until the issue becomes unavoidable. Often, it becomes harder to manage and even harder for the employee to divulge.
Others become Kangaroos, carrying their struggling team member close, over-accommodating, or shielding them from challenge. While motivated by care or shared experience, this approach can disempower and demoralize the employee, who is struggling to preserve autonomy and agency, and it can destabilize the team.
The Hyena manager, consciously or not, shifts into a “protect the pack” mindset. They may sideline or pressure the unwell employee to leave, rationalizing it as being in the best interest of performance or morale. But this often communicates that being imperfect means being expendable. The Snake waits until a mistake provides justification for action.
In an ideal world, we would be a Platypus, unusual, adaptive, and rare. This manager blends curiosity with care and pragmatism with perception. They listen for signals rather than stories, ask how they can help before making assumptions, and respond with flexibility grounded in structure.
As managers, considering the impact of chronic illness invites us to redesign for the reality of managing humans for the unpredictability and unevenness of the human body and spirit as they truly are. This is about diversity, inclusion, and functionality.
If managers and workplaces can support those of us living on altered maps, they might be better equipped for everyone navigating the detours of life we have written about over the years — be it caregiving, grief, burnout, parenting, neurodiversity, or plain exhaustion.
How to Lead When the Map Has Changed
Supporting employees with chronic illness means redesigning systems with variability in mind. Sometimes, productivity, like health, comes in waves, not on fixed timelines.
Rather than asking employees to explain or justify their conditions, managers can focus on listening for signals: subtle shifts in behavior, energy, or engagement that may indicate the need for adjustment. When someone says they need to work differently, the most helpful question is, “How can we support that?”
Unfortunately, organizations have not always been successful in building career paths that accommodate rerouting; for example, for employees who are parenting and caregiving. Employees may need to pause, slow down, or shift directions entirely.
It is also important to remember that individuals disclose when the environment feels safe, not when they are told to “bring their whole selves to work.” Today, for the most part, most of us feel that we can bring our whole selves to work as long as we present as healthy. Asking someone to “just be honest” is cruel if honesty costs them their career.
Leaders can help by modeling imperfection themselves and being transparent about the tradeoffs of high performance. Insufficient leave, lack of flexible scheduling, and persistent stigma around health-related vulnerability hinder employees’ ability to recover and contribute. Even when laws exist (e.g., the Americans with Disabilities Act or the Pregnancy Discrimination Act), cultural signals often suppress help-seeking behavior.
The Gifts of a Wounded Traveler
While chronic illness can limit what we do on a given day, it often expands how we do it and how we see others doing it, too. The workplace tends to frame illness in terms of risk: absenteeism, lowered output, and cost. However, like neurodivergence, experiencing and managing chronic conditions can also cultivate capacities that align with what teams and leaders supposedly need the most today.
Illness sharpens time awareness and forces prioritization. Many of us become radically organized because we have no choice. When energy comes in limited units, we learn to protect it, map it, allocate it with care, and triage what matters, what can wait, and what needs help. And who needs help.
Illness also strips away pretense. It makes us vulnerable for sure, but not fragile. It teaches us to ask for help, to receive support, and to notice subtle cues in others. These are core leadership skills: humility, attunement, and relational intelligence. In managing a body that betrays expectations, we become more aware of what others are carrying and more willing to accommodate differences without demanding explanations.
And perhaps most powerfully, chronic illness often deepens empathy. We may be short-tempered sometimes because we are in physical and mental pain, but we will also be more empathetic and understanding of others presenting with differences. We may become more patient with these differences, more skilled at navigating ambiguity, and more courageous in trying to reach out to address imbalance.
Similarly, chronic illness teaches us that change and life are not always gradual, fair, or predictable. It allows us to lead and support others with greater sensitivity, especially in times of organizational transition, personal loss, or systems in flux. One day, your body works the way you expect. The next, it does not. And in that reckoning, many of us must develop comfort with uncertainty, navigating life with less entitlement and more realism and resilience. Not everyone gets what they need and want. Not everyone starts from the same baseline.
Illness makes visible what is true for many marginalized people at work and in society: that effort and outcome are not always proportionate. What is “equal” on paper may not be equitable in practice.
Just as organizations are learning to recognize the assets of neurodivergent talent — such as pattern recognition and creative thinking — they must also learn to recognize what employees with chronic illnesses bring. Like caregivers who feel supported feel understood, we can also bring perspective, focus, and loyalty.
Driving with Pain in the Passenger Seat
For those living with conditions like mine, the path is not broken, but it is different. If you manage or love one of us, please understand this: Some of us are always driving with pain in the passenger seat, bad shocks, or blurred mirrors — and sometimes, we look out for death approaching in the rearview mirror.
But we are not asking to be rescued or fixed. We are asking for room to move forward, in the ways that we still can, perhaps sometimes sideways, and be accepted as we are. Still capable and very human.
And perhaps special in different ways, too. To extend our metaphor, chronic illness changes not only the map, but also the travelers. And in that change, we may discover paths worth following, not just for ourselves but for everyone seeking their way. I have tried to do just that while trying to befriend my own companion in the passenger seat.
A personal note: I live with a connective tissue disorder, invisible to most but ever-present to me. I wrote this not because I have mastered the art of managing illness, but my disorder helped me learn to navigate change, live with unpredictability, and read the world differently. Most of all, it has taught me the value of compassionate workplaces — and fueled my desire to help build them long before my formal diagnosis. Please reach out or comment below if you would like to exchange ideas or feelings.
