Lyme4Lent 2020: How to "Get It" with COVID-19

I would like to thank COVID-19 for supporting the Lyme4Lent Challenge in bigger ways than I ever imagined (and for the “Corona and Lyme” joke – but please stop, because that one got old before it even left China).

The intent of #Lyme4Lent is to induce some of the struggles that face Lyme-MSIDS and other chronically ill patients on a daily basis, so that people without these diseases can better understand the challenges we face. But of course it has to be done in a safe manner that is not likely to have ill effects on health, which is tricky considering the very issue at hand is poor health.

Enter the new Coronavirus, which is illustrating to the world much of the Lyme experience, with the added benefit of having serious consequences for one’s health (only good because it makes people pay a lot more attention) which I did not have to encourage or cause. It’s another way to “get it,” which is conveniently global with a captive audience.

What COVID-19 Can Teach Us About Lyme:

1. WE are the at-risk community. Many people in chronically ill circles are (understandably) taking issue with the fact that the official narrative surrounding COVID-19 is “Don’t panic; only the elderly and those with compromised immune systems are at risk.” This is supposed to calm the average citizen, but it is offensive to the growing number of people with “invisible illnesses.” It is another reminder that “we” don’t matter in the big picture. Everyone stay calm and be glad you’re not “one of them.” Thankfully, “we” are speaking out, and social media is fast to spread the message that too few government officials take time to covey: these rules aren’t just to stop you from getting sick; they are crucial for everyone to follow in order to protect the millions at risk, whose lives still matter. Take more extreme measures than you would for yourself, out of respect for the vulnerable to whom you might be a vector of disease.

What is an “invisible illness?” Immunodeficient and autoimmune disorders very often do not come with outward manifestations. “You don’t look sick.” We don’t all live in bubbles, we don’t all wear respiratory masks, we don’t all have wheelchairs. We live seemingly normal lives, and are just the next person in line at the grocery store. But we take extraordinary unseen precautions to lessen the burden on our immune systems, including energy, pain, and stress management.

I don’t care if you’re the cool-headed one not panicking over a simple flu virus. Don’t judge the next person wiping down the counters, canceling plans, and stockpiling. You have no idea what they’re going through. Speaking of which,

2. Stockpiling is a necessity for some of us. The toilet paper memes abound, and yes, I am amused by them as much as the next person. No, a respiratory virus is not going to give you diarrhea. No, we don’t expect to use 480 rolls of toilet paper by the time the schools reopen. But before you get your squeaky-clean breeches in a bunch, I’d like you to consider some things you may not have thought of before.

First, very simply, in cities declaring emergency, the kids are home from school, and the parents are working from home. You’re going to need more toiletries and food than normal because you aren’t getting them from public facilities during the day.

Second, when you are chronically ill, stockpiling becomes a strategic necessity for the very simple fact that we never know when we will be able to leave the house again. (I believe this is the reasoning behind COVID-19 grocery sweeps – people want to be prepared for a quarantine scenario.) Lyme and other chronic illnesses can leave you house-bound for weeks at a time. The random onset of debilitating symptoms like extreme fatigue, vertigo, nausea, and cognitive impairment means that at any given time, we may be unable to leave the house. And if that time coincides with diarrhea, or menstruation, or the simple run-out of toilet paper, we are in trouble.

If you live with other people who can make TP runs, or have close friends and family nearby who will, literally, save your butt, consider yourself privileged. Some of us are single, have sick spouses or kids, no family, and no friends checking in on us. We rely on ourselves and our ridiculous-looking stockpile to be prepared.

This is even more critical with food. Many Lyme patients have multiple food sensitivities, allergies, mast cell disorders, and are on special diets. Running out of food in a critical health crisis is even worse than running out of toilet paper.

I’ve seen a surprising number of able-bodied people slamming the stockpiling of bottled water. Look, nobody likes plastic, in their bodies or the environment. We’d all prefer a world without it, but we don’t all have the privilege of owning our homes and being able to install proper filter systems. And the US just hasn’t caught up with glass bottle deposits. Brita pitchers and the like don’t protect the chronically ill from all the potential hazards of fluoride, deposits, pharmaceuticals, and heavy metals that may be present in tap water. I can actually smell the chlorine in my tap water. Perhaps you find tap water safe enough for you and your family. That’s fine. But for those with compromised immune systems and genetic mutations whose bodies struggle to filter out a “Generally Recognized As Safe” amount of toxins, we can’t rely on tap water. So let us have our bottles.

In summary, do not judge those who buy in bulk. You don’t know just how much they or their families depend on it. If you are a healthy person who is stockpiling in a last-minute panic, please consider leaving something for others to survive on, and maybe use your foresight to share with the vulnerable population: those elderly, bed-bound, and chronically ill who don’t have the good fortune to leave the house. And everyone just be prepared in the future so we don’t have mad dashes like this one.

3. Our grand plans get canceled all the time. There’s a lot of disappointment going around, as concerts, sporting events, conferences, and vacations are being canceled. Welcome to Lyme Disease. As mentioned above, we never ever know when overwhelming fatigue, vertigo, nausea, pain, light and sound sensitivity, or other symptoms are going to pop up, so we rarely make big plans. When we do, we have to accept that they are likely to be canceled. We miss out on a lot. Not just the big things we can put off until later, but the once-in-a-lifetime experiences like weddings, baptisms, funerals, farewell tours, and even our children’s lives as we exist in constant brain fog.

This disappointment, even despair, that you feel is what we are dealing with every single day, for years. You have every right to grieve your losses, but please remember to keep it in perspective, and use that perspective to reach out to someone with chronic illness, who has missed so much already. Learn how to socialize even when you can’t go out.

4. The politics of healthcare. The thing about pandemics is that they bring to the forefront all things political about healthcare. It’s the government officials making all the announcements, issuing guidelines, closing schools, and pushing Congress to act quickly on economic measures pertaining to the disease. Executive orders and swift actions are being issued with uncharacteristic speed because everyone is focused on saving the country from this perceived threat. Global politics is consumed with pandemics: closing borders, changing travel and immigration procedures, and blaming each other for the genesis and spread of novel pathogens.

Imagine if you went to your doctor with all the documented signs of Coronavirus, and were sent home with a bottle of aspirin, and told not to worry, because you’ve got a good immune system and it won’t be a problem for you? Or imagine if you were turned away, being told that your own hysteria was causing the symptoms, and you should see a psychotherapist instead of an infectious disease specialist?

Can you imagine the outrage? Can you imagine the heads that would roll if 300,000 people became infected and the medical and political establishments refused to act?

This is literally what is happening with Lyme Disease, and has been for 30 years. Please watch the documentary “Under Our Skin” for more information.

These kinds of politics, mishandling of our disease, ignorance, and lack of funding and unbiased research have been plaguing Lyme Disease sufferers for years. We’re over the shock of finding out that “the best” in the world cannot save us. That the “greatest nation on earth” doesn’t care about us. That it’s about what sells in the media, what sells on the stock market, what sells in the polling booth. So forgive us if we not only don’t care about COVID-19, but we’re downright MAD that a simple flu virus can demand so much swift action and public awareness, while we fight, literally to the death, just to get our own disease recognized by our insurance companies.

5. We don’t know if and when we can return to work/school. My area has a growing number of COVID-19 cases (in fact, I’m literally surrounded by them, county by county) so schools are closed and employers who can are implementing work-from-home policies. This greatly affects our daily lives, especially if you need childcare. People are already getting restless. It’s life-altering.

Turns out, staying at home all day isn’t the “vacation” people think it is. If you find yourself being greatly inconvenienced and bored by the home-bound policies, please remember this next time you want to tell a person with chronic illness that “it must be nice staying at home doing nothing all day.” It’s one we hear a lot, and it’s one that hurts a lot. Humans are not meant to stay cooped up in their homes, with no job, no educational stimulus, and no social life. It’s a downright miserable existence.

When you are well, and have the energy to catch up on cleaning, spend time on your hobbies, go run some errands, play with the kids, etc., being at home indeed feels like a much-needed vacation. When you’re paralyzed with pain, anxiety, vertigo, nausea, brain fog, have lost your career, your hobbies, your friends, and it takes a whole day’s energy just to vacuum the floor, it is a prison.

There are also financial implications of not working. There is always anxiety around not receiving your regular paycheck. Add to that a growing list of medical bills and treatments (which insurance won’t cover, thanks to #4) and never knowing if you’ll ever have a regular paycheck again, and you can start to imagine the fear that overwhelms victims of Lyme and chronic disease. Though there are estimated to be 2 million of us, I haven’t heard any prime time special bulletins from the President urging Congress to help out with our payroll taxes and small business loans.

If you’re still under the illusion that getting out of school is the greatest thing ever for a kid, please spend some time with a child who has missed most of it because of Lyme Disease. They’re not living it up with Ferris Bueller. They are missing out on a normal childhood, being distanced from their peers, and trying to navigate a very expensive world without a college degree. Upset that spring break got rearranged? Imagine this is the story of your entire life.

6. “Stuff” Happens. It is increasingly rare in our modern society that we can’t control the circumstances of our lives. The internet goes down, the weather changes, the train doesn’t come on time, and we tend to have a meltdown over losing control for 15 minutes, or God-forbid, an entire day. We totally take it for granted that we have control of our lives.

COVID-19 has disrupted everything, for at least the next week. Easter is coming, and we have no idea how to plan our holiday in light of all these public safety measures. It is a time of uncertainty, even if you’re just an average Joe with no crashing stocks or international affairs.

If you can learn anything from a Chronic Lyme warrior, it’s that “stuff” happens. Sometimes it is really bad life-altering “stuff” that will leave you lonely, broken, disillusioned, and in despair. Sometimes that “stuff” will destroy your life, if it doesn’t kill you first. But what usually happens is that life goes on. You learn to live with the “stuff” - by stepping around it, by covering it up, and sometimes by just learning to walk right through it and getting used to the smell. “Keep calm and carry on” really is the only thing you can do. Humans are incredibly resilient.

But, in the spirit of the Lyme4Lent Challenge, I would ask you to do more with your “stuff” than carry on. Learn to see it. Learn to appreciate how little you have to deal with it on a daily basis. Learn to see the invisible millions who are wading knee-deep in their “stuff” day in and day out, who never get a second glance, who never get a helping hand, who never get any relief from the ignorance, judgment, and isolation of living with their “stuff.”

COVID-19 couldn’t have come at a better time than the Lenten season. May we all use this opportunity to give up our fast-paced self-serving routine and see each other, care for one another, and love our neighbors.

It's time to "get it."

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