Forgive me if I don’t have much sympathy for your quarantine woes. Unless you are trapped in an untenable, dangerous situation, it’s not that bad. After five plus years with Lyme, I have had to self-quarantine off and on, sometimes for months. Not for the same reasons, nor in the same way, but the idea of staying with myself and enduring has become, while not enjoyable, also not that difficult. That small, mean part of me feels vindicated after years of trying to explain what it’s like to have Lyme. There are several big similarities: poor/inaccurate testing, puzzling symptoms, lack of treatment, and no agreed-upon protocol. Like millions of Americans, I’m outraged at the flaccid, impotent response of our government, and in particular, the CDC. Unlike most of them, I’m hardly surprised. This is the same CDC that has disparaged, obfuscated, gaslit, and even implied that there is no such thing as “chronic Lyme.” They have undercounted, underreported, and deliberately misled Lyme patients. They’re doing the same with COVID-19. We should be outraged. I know I am.
For a while, I thought the quarantine and economic uncertainty would make everything worse for me. The opposite has happened. I feel a powerful sense of relief. I am no longer alone in my battle. Now almost everyone knows the fear and anxiety that accompanies not knowing what to do in the face of losing jobs, insurance, and health. Suddenly there is less judgment directed towards those who have been quietly experiencing all the things the pandemic has brought to all of us. There are real conversations, money and programs directed towards making sure everyone gets a little help through a situation that happened through no fault of their own. A lot of you are finally getting it.
This is not a slam against anyone I know. Unless I’ve experienced something firsthand, I don’t really get it, either. We’re all scared that this is the lottery we have unwillingly entered and don’t want to win. I don’t want anyone I know to get sick or die. I don’t want to die, either. But to protest that you are the victim of tyranny because you can’t get a haircut or go to a baseball game is the height of privilege and a misguided faith in ‘American exceptionalism. Maybe America was too successful at giving us an outsized faith that getting sick and/or dying is a choice: more exercise, supplements, making sure your job has benefits, praying, you name it, we’ve given it credit. The fact is, none of us are immune to ill health. Yes, there are many, many illnesses that are life-style related. Our current model of ‘blaming the victim’ and only doling out medical care to those who have ‘earned it’ is falling woefully short in the time of a pandemic. It fell short before this, only most Americans didn’t know it, unless they were struggling like me.
I have had to develop my own network of information, treatment plans, and doctors with Lyme disease. It shouldn’t be this way, and I don’t know the solution. I only know that many of my friends are experiencing this jarring discovery that government agencies that we have no choice but to trust are not entirely trustworthy. It is disconcerting at best, and deadly at worst. When did we become a country that places profits over lives? Politics over solutions?
Many of you are now seeing firsthand the frustration and confusion I have dealt with for years, and I have to tell you, I am so here for that. The personal and social toll of unreliable health care is heavy, and I’m glad to share it, and more importantly, to be believed. That I feel less alone is one of the weirder reactions I’ve had to the pandemic. Go figure.
Feel free to tell me how hard this whole quarantining lifestyle is for you. How much you miss going out with friends, or going to work, or seeing a movie. How worried you are about your finances, or your kids who aren’t in school. Just know that I’ve been living this way on and off for over five years. I have been depressed, elated, scared, happy, hopeful, despairing, and above all, coping. You can do it too.