I decided to be open at work about my chronic illness. Here’s what it taught me

A recent Society for Human Resources Management study found that 47% of employees with invisible chronic conditions—illnesses or disabilities that limit activities and functions but lack visible symptoms—have not disclosed their conditions to their employers. When I first read this statistic, I wasn’t surprised. In a world where the majority of people with invisible disabilities fear discrimination and stigma should they disclose, where is the incentive to do so?

I am part of the 53% who has disclosed her invisible illness to her employer, and fortunately received support, empathy, and understanding as a result. Without a doubt, privilege is at play here. I’m a white, college-educated woman with five years in my career under my belt. This affords me access to opportunities and healthcare as well as social and cultural latitudes that, unfortunately, many do not share. 

I wish my experience could be the norm. As I reflect on the experiences that led me to this point, I’m considering how organizations and their leaders can rethink these disclosures to better support employees.

Who can afford the risk of disclosing 

For the majority of my career, I’ve grappled with an acceleration in symptoms from my chronic illness, later found to be a likely result of the Lyme disease I contracted while in utero (something that impacts only a very small population of fetuses globally). My body could not sustain the consistent schedule and output needed to succeed in a traditional workplace, so I turned to self-employment, which allowed me to earn a living while managing decades of health challenges.

With my health stabilized, I began seeking traditional employment in 2023. Inevitably, the question of why I was interested in working for someone else after so long working for myself would come up. I decided to be honest and candid, letting employers form their own opinions. 

While my health challenges were far less acute than they once had been, I knew that my chronic illness would always be a part of my professional story—so sharing that early on in the process would help me gauge reactions and understand whether an organization would be the right fit for me. Plus, I was largely targeting healthcare companies in my search, and I knew that my experiences on the patient-facing side could be an immense asset to leverage during the interview process.

Still, each time I shared the reasons behind my unconventional résumé history with a recruiter, I felt a twist of nerves in my stomach, born of the instinctive thought that such an admission would be an overall detriment to the way I am perceived in the workplace. 

I’m sure you can imagine how delighted I was at the number of recruiters and hiring managers who responded with empathy, kindness, and appreciation for my honesty. One recruiter thanked me for my bravery and shared that she also lives with an autoimmune disorder. Another commiserated with me about how challenging it is to live with Lyme disease, as his mother-in-law had just been diagnosed. 

These conversations typically segued neatly into discussions about my ability to adapt to and around my chronic illness, underscoring that I am the kind of employee (and person) who looks to leverage her lived experience toward positive outcomes for others—and am committed to using all the effort possible to do so.

Ultimately, my approach paid off. Since the start of 2024, I’ve been able to leverage my experience as a “professional patient” (a phrase I coined as a half-joking nod to my lifetime spent in and out of doctor’s offices) to better serve patients and providers through my work as a content marketing specialist for a healthcare startup. 

Advocating for truly accessible approaches

When I joined the organization for which I now work, I once again chose to share my experience living with lifelong chronic illness—this time, with colleagues and my manager. 

That’s because the internal culture is one that I knew would be accepting and accommodating. During an initial call with a new coworker welcoming me to the team, I learned that they also live with a chronic illness. The ease with which they disclosed, and the way they spoke about the organization’s response—that their disclosure had been met with reminders that their health is the most important thing, and encouragements to arrange elements of their work to be as accommodating as possible—told me that my disclosure would likely be met similarly.

As it turns out, I was right. My disclosures sounded different depending on who I was talking to; I often deployed the “professional patient” joke when in conversation with clinicians or researchers, while I got a bit more granular with the people I collaborate with often, such as my team and my manager. Regardless of how the conversation started, it always ended the same way: They were gracious and thankful for my candor, and I was likewise thankful for their understanding and willingness to hear me.

Unfortunately, researchers have consistently found that my experience is a rare one. A 2021 academic analysis found that most chronically ill and disabled office workers spend a disproportionate amount of energy concealing all visible symptoms of their condition for fear of discrimination or retaliation. 

That means their time spent away from work isn’t spent preparing to return refreshed and renewed but rather managing their symptoms so they can continue to conceal them at work. This could include, but certainly isn’t limited to, sleeping 10 to 12 or more hours on the weekends, fitting in all-day IV infusions between errand-running on Saturdays, or staying in their home and not speaking to any friends or family members to manage emotional and cognitive burnout. Is it any wonder that people with disabilities are part of the subgroup found to experience 26% higher work-related burnout?

Like millions of other workers across the United States, the choices I make about my career and ways of working are driven primarily by the chronic condition with which I live. Employers, founders, and managers can help alleviate this mental burden for their employees with invisible disabilities by doing these three things:

• Rethink ending remote work. For many disabled or chronically ill employees, remote, hybrid, and/or flexible work isn’t a nice-to-have—it’s an accommodation and an equalizer. In a remote-first workplace, chronically ill or disabled employees can have equal visibility on their work as their able-bodied and healthy counterparts without having to worry about being judged for their invisible condition.
• Prioritize curiosity and empathy. Two people with the same invisible condition may have very different symptoms. Encourage managers and leaders to respond to disclosures with empathy and gratitude—responses that lead to massive increases in both employee engagement and well-being.
• Open the floor. While no one owes anyone a candid disclosure of their health status, consider offering opportunities to impact and shape diversity, equity, inclusion, and accessibility (DEIA) initiatives, such as employee resource groups (ERGs), to employees like me who have elected to do so. Their expertise in their own experience is uniquely valuable, and should be seen as such. To that end, ensure these opportunities are genuinely and thoughtfully offered, not just put together as a way to tick a box on a list of inclusive options.

As some organizations choose to downsize DEI initiatives, and even stop using words like equity altogether, it’s never been more vital to ensure employees—regardless of health, ability, gender, race, and more—are supported so they can do their best work. I’m living proof that these approaches work, and I hope that more organizations choose to follow suit.

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