Listen Up: Chronically Ill People Know What We’re Talking About When it Comes to COVID-19

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.

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It was summer 2014, four months after the accident that left me with chronic illness and pain. I’d lost a third of my body weight. I was so sick and in pain I was unable to eat or drink enough to sustain myself.

With my life in the balance, we went to a prominent San Francisco Bay Area hospital. In the emergency room, a doctor checked me over for about three minutes. She then told me there was nothing they could do for me.

My husband, furious, said, “If she dies, it’s on your head.”

“No it’s not,” she shot back, not missing a beat.

Thanks to help from an influential doctor, another hospital did take me, which saved my life. But in that crisis, I learned something I’d find out again and again over the following years—as a so-called “chronic case,” my life didn’t have the same value as other people’s.

Now that the World Health Organization has declared COVID-19 a pandemic, the U.S. is bracing for an onslaught of cases. We don’t know how overwhelmed hospitals will get, but I fear for myself and others with chronic illness and pain.

Many of us are all too used to having to demand, plead, or otherwise bend ourselves into a pretzel to be taken seriously enough to get the care we need. What will happen to us when difficult choices have to be made about who gets what treatments?

The media, far from being on our side, has fanned the flames of prejudice against us. Despite the fact that we’re among the most vulnerable, people with chronic illness are rarely if ever mentioned in the media coverage of COVID-19. And if we are, it’s often in the context of reassuring the public that there’s nothing to worry about as long as you’re young and healthy—unlike those “other” people who have underlying conditions.

The message is clear: our lives are expendable.

As a former journalist, I’m beyond dismayed at how the media is talking about us. It’s a missed opportunity. We’ve been navigating our way through the U.S. healthcare system—many of us for years—and know its strengths and weaknesses. Investigative reporters could and should be talking with hospital savvy patients like ourselves. We could be shining a light on the cracks in the system before it’s too late.

Over the past six years, I’ve seen the U.S. hospital system from the inside out. It isn’t pretty. We’ve learned about triage on TV but in real life, decisions about who gets attention in the ER often comes down to the discretion of doctors, luck, timing, or all of the above. In the crush of a pandemic, I expect these decisions to be even more spur of the moment. I don’t trust that bias against people like me will be swept away. But even if it is, chaos and disorganization could end up harming any number of patients.

After getting through the lottery in the ER and being admitted to the hospital, what I experienced would make your hair stand on end. Rooms weren’t disinfected with the regularity or care you’d expect. Nurses, phlebotomists and assistants were often sloppy about hygiene. In fact, an undercover investigation found that hospital workers were bad about hand washing, with only 30-50% doing so when they should.

You have a 1 in 25 chance of developing a new infection just from staying in the hospital, according to hospital safety monitoring organization Leapfrog. Those odds jump to 1 in 4 for Medicare patients, who are more susceptible due to age or disability—which includes the chronically ill.

Our already precarious situation could become catastrophic when combined with COVID-19, as many of us are immunocompromised. But, really, anyone fighting off this novel virus shouldn’t be exposed to extra pathogens. How safe will the U.S. population be? We don’t know.

The chronically ill could also have problems no one’s talking about. First off, we’re not as easy to quarantine as more typical patients. I couldn’t be moved to a facility such as a quarantine tent or hotel room without my husband or someone else there with me to care for me. As a result, I could die, spread the disease, or both.

The coronavirus itself isn’t the only danger we face. Like so many, I’m dependent on medications in order to manage my condition. Already the FDA has warned of potential disruptions in the pharmaceutical supply chain due to COVID-19. Without needed medications, many of us will need to be hospitalized. Some of us will require intensive care. This would put more pressure on the system.

Finally, there’s the long term. Many people with myalgic encephalomyelitis/chronic fatigue syndrome, for example, started with viruses such as Epstein-Barr and Ross River Virus. There are also post-Ebola syndromes. This means that even after the pandemic passes, we could have a new crisis on our hands. Why aren’t journalists speaking to people who had this happen to learn more about the threat it poses? There’s plenty of discussion on Twitter among those in the chronic illness community about this and many other issues. They’re not hard to find.

The bottom line is that the hospital system in this country is riddled with problems and issues that people like me know all too well. Seen from the inside, it’s a fragile system that will be tested in the coming weeks, months, and even years.

The public needs to learn what we’re up against. Changes must be made before it’s too late. The chronically ill could play an important role in making this happen, for our own sakes and those of millions of others. We need to be part of that conversation, not treated as a side issue to be ignored.

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