How Chronically Ill Individuals Are Reprogramming Fitness Trackers for Pacing and Survival

On a bright January afternoon in New York City in 2023, a 34-year-old writer experienced a life-altering crash mid-ride on her bicycle. Just 15 minutes from home after covering 40 miles, her body suddenly shut down—her brain felt as if it were on fire, her skin turned red, and her limbs became leaden. What began as a routine ride ended in exhaustion, confusion, and a full day confined to bed. By 2026, that same writer—still living with Long Covid, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome—had transformed her relationship with fitness trackers into a daily survival strategy. No longer pushing herself toward overexertion, she now uses devices like Whoop, Garmin, and the recently launched Visible band to guide her through life with chronic illness by doing less, not more. This is the story of how disabled Americans are repurposing consumer wearables into essential tools for pacing, energy conservation, and reclaiming agency over their health.

Why Pacing Matters: Managing Energy in Chronic Illness

For millions of Americans living with invisible disabilities such as Long Covid, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), POTS, fibromyalgia, and Parkinson’s disease, pacing is not a luxury—it is a medical necessity. Pacing is an energy management technique that involves balancing periods of activity with strategic rest to prevent physical and cognitive crashes. Unlike traditional exercise regimens, pacing is designed to avoid overexertion entirely.

The Science Behind Energy Management: Spoons and Self-Awareness

The concept of pacing is often compared to the ‘spoon theory,’ popularized by Christine Miserandino in 2003. The metaphor describes a finite daily energy reserve—represented by spoons—that individuals must carefully allocate across tasks. Those living with energy-limiting conditions learn to prioritize activities, delegate responsibilities, and decline invitations not out of laziness, but survival. Pacing is not a cure, but it can reduce symptom severity, prevent disease progression, and restore a sense of predictability to lives often dominated by unpredictability.

“It’s energy conservation. With pacing, the idea is to avoid running out of spoons by carefully budgeting them.” — Raouf Gharbo, osteopath and rehabilitation specialist at Virginia Commonwealth University

Yet pacing is notoriously difficult to master. It requires hyper-awareness of bodily signals, constant self-monitoring, and the emotional discipline to say no—even when health care systems and social expectations demand otherwise. This is where consumer wearables, originally designed for fitness optimization, enter the equation as unintentional allies.

From Step Counters to Life Savers: How Fitness Trackers Got Reprogrammed

Fitness trackers like Whoop, Fitbit, Garmin, and Apple Watch were engineered to maximize performance—encouraging users to move more, sleep better, and exercise harder. But for people with chronic illnesses, these same devices can be repurposed as diagnostic tools for underperformance. By ‘misusing’ them—focusing on recovery, heart rate variability, and strain instead of steps or calories burned—disabled users are extracting life-saving data from tools never intended for them.

Whoop’s Recovery Score: The Morning Compass for the Chronically Ill

The writer’s turning point came five months after her 2023 crash, when she resurrected a Whoop 4.0 band from her ‘tech box’—a storage bin of unused devices. Her cardiologist had emphasized sleep as part of her POTS treatment plan, and Whoop’s Recovery score, which synthesizes resting heart rate, heart rate variability, skin temperature, and sleep quality into a daily percentage, seemed like a promising way to monitor progress.

What she discovered was revelatory. While green recovery days (70%–100%) allowed for normal activity, yellow days (34%–69%) signaled caution, and red days (1%–33%) often preceded full-blown crashes. By treating the Recovery score as a daily risk assessment, she began adjusting her schedule: limiting errands on yellow days, avoiding high-strain activities on red days, and prioritizing rest when red flags appeared. This wasn’t fitness optimization—it was crash prevention.

The breakthrough didn’t stop there. Whoop’s Strain score, which measures cardiovascular and muscular exertion on a scale from 0 to 21, became another critical metric. A score of 10 or above reliably predicted a crash within the next 48 hours. By checking the app multiple times daily and capping her strain at 9, she turned a passive device into an active pacing system—one that required constant vigilance but delivered invaluable foresight.

Garmin Users Take Charge of Real-Time Heart Rate Spikes

Samhit Utlapalli, a 26-year-old from Alabama, experienced a similar awakening after developing POTS following a dual Covid and flu infection in 2022. They began fainting two to three times daily—an alarming pattern that led to their diagnosis. While searching for relief, Utlapalli stumbled upon an Instagram post by another person with POTS who used a Garmin watch to monitor heart rate fluctuations in real time.

They purchased a Garmin Venu 3S and began tracking their heart rate spikes. When readings climbed too high, they knew to sit down, hydrate aggressively, or step away from screens. “I use it to monitor how new medications affect my POTS,” Utlapalli says. “It tells me whether certain activities are too much for my body to handle. It’s not about pushing limits—it’s about knowing when to stop.”

The Emergence of ‘Cripping’ Tech: Redefining Disability Through Wearables

The act of repurposing technology for disabled needs—known in disability justice circles as ‘cripping’—is not new. But its application to consumer wearables is gaining visibility, thanks in part to researchers like Sarah Homewood, a professor at the University of Copenhagen who studies human-centered computing and self-tracking.

Homewood began researching self-tracking among people with energy-limiting conditions in 2021, after developing Long Covid herself. She purchased a Fitbit and soon noticed online discussions in Facebook support groups where members shared strategies for using devices to pace their energy and manage symptoms.

“So many of my participants talk about ‘data as proof.’ Being able to show loved ones and doctors that your body isn’t recovering after a full night’s sleep or that your heart rate spikes when you stand up can make a big difference in how people respond to your disability.” — Sarah Homewood, University of Copenhagen

Homewood’s research revealed three major benefits of using fitness trackers for pacing: validation through objective data, improved communication with caregivers and clinicians, and a deeper understanding of one’s own condition. The framing of ‘gaining control’ can be misleading, she notes. Instead, the true value lies in ‘understanding’—acknowledging the limits imposed by chronic illness without internalizing blame for those limits.

The Limits of Mainstream Devices: Why Specialized Tools Are Needed

Despite their utility, mainstream wearables like Whoop and Apple Watch remain imperfect tools for chronically ill users. They were designed for athletes and healthy populations, not people whose primary goal is to avoid crashing. Features that promote pushing harder—daily step goals, strain targets, and workout recommendations—can be actively harmful when misapplied to disability management.

For instance, the writer found that Whoop’s daily strain recommendations were often inappropriate for her condition. Even when the app suggested rest during red recovery days, the presence of daily strain goals created cognitive dissonance. She often had to ignore the system entirely, relying instead on gut instinct and trial-and-error.

Another persistent challenge was the lack of real-time alerts for unsafe heart rate spikes outside of workouts. With POTS, a heart rate above 120 beats per minute (BPM) while standing or sitting can trigger dizziness, nausea, or fainting. Without immediate feedback, users risk pushing into dangerous territory.

Visible Band: A Wearable Built for Illness, Not Fitness

In late 2024, the writer’s wish for real-time pacing alerts became reality with the launch of the Visible band. Developed by Harry Leeming, a mechanical engineer and Long Covid survivor, Visible was designed specifically for people with energy-limiting conditions. Leeming contracted Long Covid in 2020 after a mild infection and spent months searching for a wearable that could track his recovery without encouraging overexertion.

“I remember googling for illness trackers and expecting to find Whoop, Fitbit, and Garmin—but designed for illness,” Leeming says. “Nothing existed. So I decided to build it myself.” By 2022, the Visible app launched, followed by the band in October 2024.

The Visible band, a rebranded Polar 360, introduces a feature called PaceSetter. This tool visualizes daily energy reserves as PacePoints—units tied directly to heart rate. A ticker moves across a timeline, showing how quickly energy is being depleted. When the PaceSetter detects overexertion, it sends a gentle vibration or notification, alerting users to slow down or rest.

For the writer, the difference was immediate. She no longer had to mentally calculate strain scores or guess how much energy remained. The PaceSetter automated the pacing process, allowing her to focus on living—not monitoring. Activity tagging further refined the system, letting her track which tasks consumed the most energy. She learned that pickleball—a popular low-impact sport—demanded more energy than cycling due to constant standing, while short showers barely registered unless her symptoms flared.

Beyond Pacing: How Data Transforms Care and Advocacy

The benefits of using fitness trackers extend far beyond individual pacing. Objective data can shift perceptions in medical settings, family dynamics, and workplace accommodations. Clinicians who once dismissed symptoms as anxiety or lack of effort now review heart rate graphs and recovery scores, validating experiences that have long been medical mysteries. Homewood’s research confirms this shift: participants reported using data to justify accommodations, secure disability benefits, and even challenge misdiagnoses.

In one case, a participant used heart rate variability readings to demonstrate that their body wasn’t recovering from sleep, prompting their doctor to explore autonomic dysfunction—a precursor to POTS diagnosis. In another, a parent shared a child’s tracker data with school officials to secure a 504 plan for energy limitations.

The Ethics and Risks of Health Data in Disability Tech

While the potential of wearables for chronically ill users is undeniable, concerns about data privacy and corporate accountability loom large. Silicon Valley’s growing entanglement with health care—exemplified by RFK Jr.’s 2024 call for universal fitness tracker adoption—raises questions about consent, data ownership, and the commercialization of disability data.

The writer, who requested anonymity for privacy reasons, expresses ambivalence. “I have significant concerns about what tech companies are doing with our health information,” she says. “The coziness between Silicon Valley and certain political circles is alarming. But if these devices can help people live better lives today, then sharing these strategies is a moral obligation—even if the systems themselves are flawed.”

Key Takeaways: How to Use Fitness Trackers for Pacing and Chronic Illness Management

• Repurpose mainstream fitness trackers like Whoop, Garmin, and Fitbit to monitor recovery scores, heart rate variability, and strain—not steps or calories. These metrics act as early warning systems for crashes.
• Look for devices with real-time alerts for unsafe heart rate spikes or overexertion. The new Visible band, designed specifically for illness, offers PaceSetter notifications to prevent energy depletion.
• Use activity tagging to identify energy-draining tasks. Data insights can reveal surprising patterns, such as whether showering or socializing costs more energy than exercise.
• Leverage objective data to advocate for medical care, workplace accommodations, and social support. ‘Data as proof’ can shift perceptions and validate invisible disabilities.
• Remain critical of corporate intentions. While wearables offer life-changing tools, users must prioritize privacy, consent, and data security in an industry notorious for exploitation.

The Future of Disability Tech: Innovation or Exploitation?

The rise of specialized devices like Visible suggests a growing recognition of the disability tech market. But without regulation, ethical design, and user-centered policies, the same tools that empower patients could be weaponized against them—sold as ‘solutions’ while extracting sensitive health data for profit. Advocates are calling for transparency, interoperability, and protections for disability data, akin to HIPAA but tailored to wearable technologies.

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