For years, the headlines surrounding OpenAI have centered on artificial intelligence breakthroughs, billion-dollar investments, data centers, and high-profile legal disputes. Yet one recent announcement deserves attention for an entirely different reason.
OpenAI’s second-highest ranking executive and CEO of AGI Deployment, Fidji Simo, recently announced that she is stepping away from her full-time leadership role after a severe flare-up of Postural Orthostatic Tachycardia Syndrome (POTS) forced her to take several months of medical leave. After living with the condition for seven years while continuing to lead at the highest levels of the technology industry, Simo concluded that her recovery required her full attention. She is transitioning into a part-time advisory role while focusing on her health.
Her announcement resonated with millions of people living with chronic illnesses.
Like many successful professionals, Simo initially chose to keep working despite serious health challenges. She has publicly shared that while she was an executive at Meta, she was offered an opportunity to take a year away from work after becoming ill. She declined that opportunity, later reflecting that she wishes she had accepted it. According to a report in The Wall Street Journal, her condition progressively worsened, and she ultimately recognized that recovery would take significantly longer than anticipated.
Her story illustrates a reality that we see in our long term disability insurance law practice every day.
Many individuals with chronic illnesses continue working for years before finally reaching the point where they simply cannot maintain the physical and cognitive demands of their occupation. By the time they seek long-term disability (LTD) insurance benefits, they have often exhausted every reasonable effort to remain employed.
What Is Postural Orthostatic Tachycardia Syndrome (POTS)?
Most people rarely think about the body’s autonomic nervous system because it performs thousands of essential functions automatically. This sophisticated network regulates heart rate, blood pressure, breathing, temperature control, digestion, and circulation without conscious effort.
When someone changes position—from lying down to sitting or from sitting to standing—the autonomic nervous system instantly adjusts blood pressure and heart rate to ensure the brain continues receiving adequate blood flow. For individuals with Postural Orthostatic Tachycardia Syndrome (POTS), this automatic regulation no longer functions properly.
Instead of maintaining stable circulation, blood tends to pool in the lower body when standing. The heart responds by beating excessively fast in an attempt to compensate, yet the brain and other organs may still receive inadequate blood flow.
This is far more than simply experiencing a racing heart after exercise.
POTS is a disorder of autonomic nervous system regulation that can profoundly affect nearly every aspect of daily functioning.
POTS Causes Far More Than Dizziness
While dizziness upon standing is often the hallmark symptom, POTS affects multiple body systems simultaneously. Symptoms vary considerably from one patient to another and often fluctuate in severity. Common symptoms include:
- Chronic fatigue and overwhelming exhaustion
- Brain fog and impaired concentration
- Heart palpitations
- Tachycardia, often exceeding 100 beats per minute upon standing
- Lightheadedness
- Fainting or near-fainting episodes
- Shortness of breath
- Chest pain
- Headaches
- Excessive sweating
- Shakiness
- Nausea
- Bloating and digestive disturbances
- Sleep disruption
- Anxiety-like symptoms
- Purple discoloration of the hands or feet due to poor circulation
Many patients describe feeling relatively functional one day and nearly incapacitated the next. These fluctuating symptoms frequently make maintaining consistent attendance and productivity at work extraordinarily difficult.
What Causes POTS?
Researchers continue to study the underlying causes of POTS, and there is still much that remains unknown. Several forms of the condition have been identified.
- Neuropathic POTS involves damage to peripheral nerves that regulate blood vessel constriction, allowing blood to pool in the legs and abdomen.
- Hyperadrenergic POTS results from excessive activation of the sympathetic nervous system, commonly referred to as the body’s “fight-or-flight” response.
- Hypovolemic POTS involves abnormally low blood volume, which can produce symptoms similar to the other forms.
There is increasing evidence suggesting that POTS may involve autoimmune mechanisms, while some research has identified possible genetic contributors, including changes involving the SLC6A2 gene. Like many neuroimmune disorders, however, POTS is not fully understood.
Diagnosing POTS Can Be a Long and Frustrating Process
One of the greatest challenges facing individuals with POTS is simply obtaining an accurate diagnosis. Because its symptoms overlap with numerous cardiovascular, neurological, autoimmune, and psychiatric conditions, patients frequently spend years searching for answers.
Simo has shared publicly that she consulted approximately 20 physicians before receiving the correct diagnosis. Unfortunately, her experience is far from unusual. Many patients with POTS are told that anxiety, stress, or deconditioning explains their symptoms before appropriate autonomic testing is performed.
The primary diagnostic test is the tilt table test, which measures heart rate and blood pressure while changing body position. Insurance companies seek objective evidence, which doesn’t always exist in chronic conditions like POTS, but the tilt table test is often deemed acceptable.
Physicians may also order:
- Blood testing
- Urine studies
- Quantitative Sudomotor Axon Reflex Testing (QSART)
- Autonomic breathing tests
- Skin biopsy to evaluate small fiber neuropathy
- Additional cardiovascular and neurological evaluations to exclude similar disorders
Even after diagnosis, however, significant challenges remain.
There Is No Cure for POTS
Unlike many medical conditions that can be corrected through surgery or medication, there is currently no cure for POTS. Treatment focuses on symptom management rather than eliminating the disease. Patients often rely upon combinations of:
- Increased hydration
- Electrolyte supplementation
- Compression garments
- Prescription medications
- Carefully supervised exercise
- Lifestyle modifications
- Stress management
- Sleep optimization
Some individuals improve over time, while others continue experiencing disabling symptoms despite aggressive treatment. The unpredictable nature of the illness often makes returning to consistent, full-time employment impossible.
POTS Is Frequently Accompanied by Other Chronic Conditions
POTS rarely exists in isolation. Many patients also experience conditions such as:
- Long COVID
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
- Fibromyalgia
- Ehlers-Danlos Syndrome
- Mast Cell Activation Syndrome
- Autoimmune disorders
These overlapping diagnoses can substantially increase physical limitations while making disability evaluations considerably more complex.
Why POTS Can Be Difficult to Prove in Long-Term Disability Claims
From a long-term disability perspective, POTS presents opportunities to deny claims. Insurance companies often focus heavily on “objective medical evidence.” Unfortunately, many disabling symptoms—including fatigue, dizziness, cognitive impairment, exercise intolerance, and brain fog—are largely subjective experiences.
Although tilt table testing provides objective support, it may not fully capture the extent to which symptoms interfere with sustained work activity. Insurance carriers frequently argue that normal imaging studies or routine laboratory results demonstrate an absence of disability.
That argument ignores the reality that autonomic nervous system disorders often produce profound functional impairment despite relatively unremarkable traditional testing. The critical legal issue is not whether laboratory studies appear normal.
The key question is whether the claimant can reliably perform the substantial and material duties of his or her occupation on a full-time basis.
Continuing to Work Does Not Mean Someone Is Not Disabled
One of the most significant lessons from Simo’s experience is that many professionals continue working long after their medical condition has become disabling. Executives, physicians, attorneys, engineers, teachers, and countless other professionals frequently push themselves well beyond reasonable physical limits. Many of our clients struggled to work because of their commitment to their careers or need to provide income.
To do this, often they eliminate activities outside of work. Some spend evenings and weekends recovering just enough to return to the office on Monday. Others use vacation days as recovery periods rather than for rest or recreation. Eventually, the disease progresses beyond what determination alone can overcome.
The fact that someone continued working for years despite chronic illness should never be interpreted as evidence that the condition was insignificant. Rather, it demonstrates remarkable perseverance.
Unfortunately, the insurance companies seek to characterize this determination as proof that someone isn’t really disabled. We fight against strategy on behalf of claimants on a regular basis.
Simo’s Advocacy Extends Beyond Her Own Diagnosis
Following her own difficult diagnostic journey, Simo founded the Center for Complex Disorders (CODA) after experiencing firsthand how poorly understood neuroimmune illnesses remain. Her organization seeks to accelerate research into conditions including POTS, Long COVID, ME/CFS and other complex chronic disorders.
Its mission is to bring together researchers, physicians, patients, and advocates to improve diagnostics while developing more effective treatments for conditions that have historically received limited attention.
Her advocacy reflects an important truth. For many patients, obtaining an accurate diagnosis represents only the beginning of a much longer journey.
The Legal Reality of POTS Disability Claims
POTS is more than a diagnosis. It is a condition capable of significantly impairing an individual’s ability to work, particularly when symptoms interfere with concentration, attendance, standing, walking, or maintaining endurance throughout a normal workday.
Long-term disability insurers frequently scrutinize these claims because symptoms can fluctuate and may not always be reflected in conventional medical testing.
Successfully obtaining benefits often requires comprehensive medical documentation, detailed physician opinions regarding functional limitations, appropriate objective testing, and evidence demonstrating how symptoms prevent sustained occupational performance.
Individuals with POTS should not assume that a diagnosis alone will result in approval. Likewise, they should not be discouraged if an insurance company initially denies their claim. Many legitimate disability claims involving chronic illnesses require appeals or litigation before benefits are ultimately awarded.
Living with an Invisible Illness Requires More Than Determination
Fidji Simo spent seven years leading one of the world’s most influential technology companies while managing an invisible chronic illness. Even with extraordinary resources, access to elite medical care, and exceptional professional determination, there came a point when continuing in a full-time executive role was no longer medically sustainable.
Her experience underscores an important reality for individuals living with POTS and other chronic neuroimmune disorders: determination alone cannot overcome every medical condition.
For those whose symptoms prevent them from performing the essential duties of their occupation, long-term disability benefits exist to provide financial protection during a period when health—not work—must become the priority.
If you are living with POTS, Long COVID, fibromyalgia, ME/CFS, or another chronic condition that has forced you to stop working, understanding your rights under your long-term disability policy is often the first step toward securing the benefits you have earned.
