Bexi Lobo: COVID causes an invisible disability, making it hard to earn a living

October is Dysautonomia (dis’-oughta-know’-me-uh) Awareness Month.  Dysautonomia is the umbrella term for conditions that cause malfunction of the autonomic nervous system. 

Your autonomic nervous system controls your unconscious bodily functions, such as heart rate, blood pressure, digestion, pupil dilation and constriction, and temperature control. 

According to Dysautonomia International, “People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”

Diabetes is the leading cause of dysautonomia, followed by Sjogren’s (SHOW-grins), however, long Covid may soon replace Sjogren’s.  Postural orthostatic tachycardia syndrome (POTS) is the most recognized form of dysautonomia and the form that most people with long COVID get. 

Oct. 20-26 is Invisible Disability Awareness Week. There are over 900 identified hidden illnesses and disabilities. An invisible disability is a physical or mental impairment or condition that substantially limits one or more major life activities and isn't immediately apparent or noticeable to an observer. 

Invisible disabilities may fluctuate, sometimes by the minute, in how limiting they are.  The frequent fluctuations and unpredictable nature of some invisible disabilities, such as those of dysautonomia and its symptoms of pain, fatigue, and cognitive dysfunction, can make them frustrating, overwhelming, and challenging to manage.  

I’m raising awareness of dysautonomia because this hidden disability lacks medical care and support, which makes it even more isolating, frustrating, and overwhelming. Dysautonomia is often misdiagnosed or psychologized as anxiety, panic disorder, or functional neurological disorder, despite the fact that these debilitating symptoms are rooted in biological, not psychological factors.  The toll of living with dysautonomia and the lack of awareness and support for it can lead to isolation, despair and, sometimes, suicide. 

COVID causes dysautonomia and a range of other long-term health effects collectively known as long COVID.  COVID is not just a respiratory illness such as the cold or the flu.  It’s a serious, multi-systemic disease, caused by the SARS-CoV-2 virus, that ages your immune system and damages vital organs in your body such as your heart, brain, pancreas, and nervous system.   

How do you get COVID?  COVID is highly transmissible through aerosols that spread and linger in the air like cigarette smoke rather than droplets, as was originally, and incorrectly, communicated.  Sixty percent of COVID transmission is by people with asymptomatic COVID.  Getting infected or vaccinated doesn’t make you immune to infection or re-infection.  Vaccination reduces death and hospitalizations caused by COVID, but doesn’t stop transmission of COVID.  The only way to avoid long COVID is to not get COVID in the first place.

How do you prevent transmission of COVID?  Wearing a high-quality mask, such as an N95, K95, or KN95 mask, that fits and seals properly offers the best protection against COVID transmission.  Surgical masks offer little to no protection because they only protect against droplets and not aerosols.

If you’re sick and have cold or flu-like symptoms or GI symptoms, stay home.  If you must be out while sick, wear a properly fitted, high-quality mask.  

Before you get together, make sure everyone does a rapid antigen test to reduce the rate of asymptomatic transmission.

Gather outdoors as much as possible, keep windows open for added ventilation and use air filtration devices.  Our very own Dean of Engineering at UC Davis, Richard L. Corsi, is the co-inventor of the Corsi-Rosenthal Box, a device you can build easily and cheaply that significantly reduces the amount of virus-laden, aerosol particles in the air. 

People with hidden illnesses and disability have had to put off dental work and other medical procedures because the risk of getting COVID outweighs the benefit of the procedure.  It becomes increasingly risky for people with hidden illnesses and disabilities to get medical care, let alone socialize, when only a few people are taking precautions to prevent COVID transmission.  Many of us, especially those who are immunocompromised or immunosuppressed, live increasingly and unnecessarily more isolated lives because there’s not enough prevention of COVID transmission. 

But the plight of those of us who are already burdened with hidden illness and disabilities isn’t the only reason to prevent COVID transmission. 

A single infection of COVID, even if it is asymptomatic or seems mild, can destroy your life.  Ninety percent of people who ended up with long COVID had mild COVID infections.  Repeat infections of COVID don’t build your immunity, they just cause cumulative damage to your body.  The risk of long covid goes up with repeated infections.

Long COVID affects people of all ages, children, the elderly, and everyone in between.  The collection of health effects included in long COVID range from persistent respiratory symptoms, such as shortness of breath, debilitating fatigue, cognitive impairment (brain fog), dysautonomia, post-exertional malaise, gastrointestinal disorders, metabolic disorders (e.g., diabetes and hyperlipidemia), immune dysfunction, heart disease, and more.  Long COVID isn’t a functional neurologic disorder and if your doctor thinks it is, find a new doctor, fast. 

Covid affects people with pre-existing illnesses and disabilities at much higher rates.  Forty percent of people with chronic illness who tested positive for COVID went on to develop long COVID. People with pre-existing disabilities have more trouble getting the vaccine and some cannot get the vaccine for medical reasons.  Jean Hall, PhD, lead author of the study, says, “They not only have higher rates of long COVID, but they also have greater barriers to care, whether it’s transportation, costs, or other challenges.” 

How will the increasing number of people with long COVID impact our already broken healthcare system, the economy, and businesses?  Impaired cognition and physical abilities, and new chronic illnesses caused by long COVID translate into an unreliable work force and greater demands on our overwhelmed healthcare system.  

The infrastructure needed to support this rapid increase in people living with hidden illnesses and disabilities barely exists (watch John Oliver’s Disability Benefits episode).  Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), the government programs meant to support people with disabilities, were already underfunded, outdated, backed up, and prone to error before the pandemic.  Applying for disability benefits is a nightmare that comes with its own set of obstacles to get approved (it can take years) and, once approved, a punishing set of rules that leave you stuck in an unending cycle of poverty.  Less than a third of applicants for SSI and less than a quarter applying for SSDI are approved the first time.  The maximum monthly SSI stipend is $943 and the average monthly SSDI stipend is $1538, neither of which even begin to cover today’s costs of living. 

When it comes to making ends meet, people with hidden illnesses are stuck between a rock and a hard place.  Fluctuating hidden illnesses and disabilities require flexible work schedules and other individual accommodations, making most 9-5 jobs inaccessible.  Disability benefits are hardly beneficial unless you’re severely disabled.  Owning a business, while tough, allows one to work flexibly and doesn’t restrict earning ability; it can be a meaningful, fulfilling, and sustainable way for people with hidden illnesses and disabilities to earn a living.  But, running any business comes with its own obstacles, and there’s even less support for business owners with hidden illnesses and disabilities.

The Hidden Illness & Disability Directory of Entrepreneurs and Nurturers (HIDDEN) is a platform I’ve created to increase awareness, connections and support of people with hidden illnesses and disabilities. I invite you to check it out, apply to be listed on HIDDEN (bexiphd.com click on the HIDDEN tab), share it with others, and, most importantly, as you start to make your holiday wish and gift lists, make it one of your go-to online shopping destinations.