Listen to People With Chronic Illness When We Talk About COVID-19

Being chronically ill in the time of COVID-19 is something I wouldn’t wish on my worst enemy, and yet, there are millions of us in America. We make up a large percentage of the high-risk population you keep hearing about, and we are America’s proverbial canaries in the coal mine.

Right now, in this analogy, we have stopped singing and we are wobbling around in our little bird cages. I really hope we don’t all have to drop dead before this country takes this situation seriously. So please pay attention.

Let me start by saying, I can’t claim to speak for everyone with chronic illnesses in America. By some estimates, as much as 60 percent of all Americans are living with chronic illness. So, of course, we are not a monolith. However, I do actively engage with several chronic illness communities, support networks where people with debilitating invisible illnesses share their experiences with each other. The communities I engage with tend to be mostly female, and many members live with some poorly understood condition (or a collection of them) that has resulted in some degree of chronic pain and disability.

In normal times, I’ve seen people in these communities call getting a virus or bacterial infection being “muggle sick” — because chronic illness is so much more fun if we pretend like it’s a special superpower and all you healthy folks are just boring old muggles. In normal times, getting muggle sick means that, in addition to all our usual unwell-ness, we get to struggle through a version of the cold or flu that is somehow 10 times worse than it was for the person who gave it to us.

It’s worse because the symptoms usually hit us harder, because they often cause our other chronic conditions to flare up, and because it typically takes us at least twice as long to recover. Then, even after we’ve recovered from our muggle sickness, our chronic ailments often continue flaring up for another month or two until we find equilibrium again.

We’re Terrified – but For Good Reason

So, the first thing you should know is that we are terrified of this outbreak, and for good reason. Many of us are immunocompromised or have problems with our cardiovascular health that makes our risk of dying higher than our healthy peers. Even those of us who don’t have a diagnosed risk factor have found that we get sicker than the healthy people around us. Our bodies have overblown responses to muggle sicknesses, and we are desperate to avoid ending up in a hospital.

Which brings me to the second thing you should know.

We’re Already Familiar With the Failures of the Healthcare System

Most of us are intimately familiar with the limitations of the American healthcare system. Poor health outcomes, excessive wait times at emergency medical centers and dismissive, overworked medical staff are part of our regular lives. We’ve seen how impossibly bad ERs get on any given weekend night. We’re intimately familiar with the regular failings of the American healthcare system when it’s not under stress. So, yeah, we are practically shitting ourselves at the idea of having to navigate the healthcare system when it is truly overwhelmed. And we know just how easily that could happen. We’re closer to it than you might think.

Our system was not designed to absorb major, geographically dispersed or sustained spikes in the need for medical services. Because our healthcare system is constantly striving for economic efficiency, it ends up operating near capacity all the time. In other words, the system was intentionally designed to never have excess, unused capacity, and now that design is going to bite us all in the collective hindquarters.

Our Care Will Be Deprioritized

Third, we also know that in a medical triage situation, like the one Italian doctors are currently facing, our care will be deprioritized. If demand for medical care, especially ventilators, becomes strained enough that doctors have to make hard decisions, we’ve seen they will prioritize caring for younger patients who do not have pre-existing conditions because they are more likely to recover and do so quickly, freeing up resources to help more patients.

It’s a sobering reminder of how little our lives are valued because we aren’t as healthy as the rest of our peers. Knowing that maybe two healthy people will live doesn’t make it all that much easier to accept that we might die, slowly, agonizingly, gasping for breath, our bodies racked with coughs, as pneumonia steals our lives over the course of two weeks or longer, possibly without so much as palliative care to ease our passing, because doctors save their efforts for people who have a better chance of surviving.

Triage decisions aren’t the only reminder that we’re considered lesser-than, and that’s the fourth, and probably the most important, thing you need to understand.

Healthy Folks Are Telling Us ‘Not to Worry’

Every day, public officials, people in the media, and even our own friends and families are telling everyone to not worry. They’re downplaying the virus because it only kills the old and the sick. First of all, that isn’t true. It mostly kills the old and the sick, but even perfectly healthy humans in the prime of their lives are ending up incredibly sick, requiring medical intervention and even dying.

The odds are better if you’re young and healthy, but you aren’t completely immune. Moreover, this is a daily reminder that our lives don’t matter. Our lives are being offered up as a sacrifice. Our lives are the proffered cost of allowing everyone else to carry on without making any major lifestyle adjustments. It is a soul-crushing reminder of how little many of the people around us care. We are the other. The lesser. Not worthy of consideration, and certainly not worth disrupting your own lives over. Perhaps the world would be better off after we’re gone? It’s just survival of the fittest, right?

Some of the healthy folks reading this right now are probably feeling pretty defensive at this point. You’re thinking, hey, we’re all just trying to point out that no one should panic. I agree.

People shouldn’t panic. Panicking results in people doing ludicrous stuff, like buying 10,000 rolls of toilet paper, or purchasing a 20-year supply of hand-soap, thereby ensuring that many others are unable to participate in the hygienic practices that may help slow the spread of this virus. So yeah, don’t panic. But you should worry, and you absolutely need to start thinking about people other than yourselves. You might be unlikely to die from COVID-19, but how would you feel if you found out that you carried it, passed it on to your grandma and then she died? Each and every one of us has someone important in our lives who’s at heightened risk of death or complications from COVID-19. So, if you’re feeling super reassured by the idea that you aren’t going to die, and you then engage in discretionary activities that help spread the virus, I’m sorry to say, but that’s dangerously irresponsible.

We’re Taking It Seriously – and We’d Like You to Join Us

The fifth thing to know about how chronically ill people are handling this pandemic is that we are taking it very seriously and we want you to join us. We’re preparing for the worst, we’re ahead of the curve and we’re still hoping everyone else will catch up. Right now, we know the most effective (really, the only effective) way to stop the spread of this highly contagious virus is social distancing. Nearly every epidemiologist and public health expert in the country is talking about how we need to engage in social distancing practices. The time is now and we must act before it’s too late.

While most people in this country, including the leadership at the top, are still dithering about when and how to do this, most of the people I know with chronic illness have been preparing to isolate themselves for the last couple weeks at least. Some of us have already been stocking up on food, medications and other essentials. We know our lives may depend on our social isolation in the coming months, and many of us, who are lucky enough to have flexible work situations, have already begun isolating ourselves in our homes.

I think we’re all a bit surprised, however, that our healthy peers aren’t taking this as seriously as we are. We know that without major and proactive social distancing measures, the infection rate is going to skyrocket. We know the virus spreads exponentially without aggressive social distancing measures. And, as I’ve already pointed out, we know the healthcare system can be easily overwhelmed.

All this leaves us screaming into our chronic illness echo chambers: Why aren’t the muggles doing social distancing? Why hasn’t our government taken more aggressive steps? We feel like Cassandra, given the gift of foresight but cursed to never be believed. Or like we’re standing in a fire tower, crying out that the world is burning, but instead of coming together and fighting the fire, folks just keep insisting that the fire won’t actually affect them.

It’s immensely frustrating. But again, it’s nothing new. We’ve all been screaming into the void for years about how impossible it is to get sick leave from work, how SSDI and unemployment are unattainable for the average person, how broken our healthcare system is, and how inadequate our social safety nets are. This pandemic has shone a bright and unflattering light on these failures, and we’re observing in disbelief because we’ve been trying to get everyone to see that for decades.

At the same time, we are so very thankful for the people in our lives who are listening and taking this seriously. We’re exceedingly grateful for the friends who are already social distancing, self-isolating with the common cold or allergies and doing their best to educate their networks and communities.

Most of us also live with people who are trying to be responsible on our behalf. My husband, for instance, already works from home, but he has agreed to go on lockdown with me during all this. Neither of us will be engaging in social activities outside of the home, instead trading them for virtual hangs. We’ll miss shows and concerts and our weekly taco fix. He’s changing his running routes to avoid trails and paths that would put him within six feet of other humans.

We’re mutually keeping abreast of the latest developments in both the science and the disease progression around the world and close to home. We’re actively encouraging everyone we know to take the same preventive steps. Some don’t want to hear it, but others are more receptive.

Which brings me to the final takeaway.

We’re Desperate for Action

We’re desperate for actions to be taken to minimize transmission. Our lives depend on infection rates staying low. Our lives depend on the hospitals not being overwhelmed. Our lives depend on our healthy peers staying healthy. We are so very tired of trying to convince people that our lives are worth protecting. We’re sick of trying to remind people that everyone will be affected and that disruptions and inconveniences are worth it if it saves the life of someone’s 80-year-old grandpa, or their friend going through chemo, or their middle-aged brother who has diabetes, or their teenage niece with severe asthma, etc.

Those of us with chronic illness want everyone to begin engaging in social distancing. Do it now. The public health is at risk. Public, as in belonging to all of us, and it’s everybody’s social responsibility to help slow the spread of this virus. #FlattenTheCurve. Prevent the healthcare system from being overwhelmed. Because if COVID-19 spreads and you get it, while you might not die, you may very easily end up in excruciating pain that doctors cannot help because they’re trying to save lives and your case is “mild.” Most cases are mild — about 75 to 85 percent — but especially if you’re in a high risk group, mild could still mean deadly. According to the CDC, serious illness occurs in 16 percent of cases. While it might be worse for us, it’s going to be really bad for a lot of you healthy folks as well.

So, just this once, listen to Cassandra. Cancel everything. Stay home, as much as you can. It’s better than the alternative.

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Coronavirus Disease 2019 (COVID-19)