What Lyme Patients Can Teach Us About the New Normal

by Jennifer Crystal

The start of a new school year is usually a time of excitement: new pencils, new books, new teachers and classmates. While there’s always some trepidation for students, teachers, and parents alike, there’s also a general thrill in the air in September. This year is different. With COVID-19 still very much a threat, schools have been scrambling to figure out the best plans for opening. Some have decided on remote learning, some are doing a hybrid form, and some have left the choice up to parents.

What’s the safest plan for children and teachers? How do we balance physical safety and mental health? How will parents juggle work with homeschooling? These are the questions communities have been grappling with.

For Lyme patients, this isn’t our first rodeo. We’ve had to miss school or work for months or even years due to tick-borne illness. Some children have to do hybrid forms of school, attending for a few hours a day or a couple of days a week and supplementing their education with at-home learning. Adult patients find themselves unable to work, struggling to make ends meet, pay medical bills, and fight for disability benefits. Some, like me, have to alter their work schedule—and their perspective—in order to maintain their health.

Lyme patients know the stress and anxiety that comes with these adjustments. While we certainly don’t have all the answers, we can offer some guidance on handling school and work-related choices during the pandemic. Here is some perspective I’ve gained from years battling Lyme, two of its co-infections babesia and ehrlichia, and chronic Epstein Barr virus (and, most recently, long-haul COVID-19):

• The situation is temporary: This pandemic may feel like it will go on forever, but eventually, we’re going to be able to go back to school and work normally. For some Lyme patients, this type of full return is not possible, but many get well enough to lead fruitful lives in adapted ways. My own recovery has allowed for different capabilities at different times. It helps to remember that COVID-19 only requires temporary adaptation.
• There is no perfect choice: Parents are agonizing over whether to send their kids to school. Unfortunately, there is no perfect solution, because we don’t know what will happen later in the fall or the winter. Some communities may get hit with a second wave of COVID-19. Some hybrid plans may work better than others. Children have different needs and capabilities, as do adults. There’s no cookie-cutter answer, just as there’s no set protocol for Lyme patients; moreover, no two cases cause the same exact limitations or have the same solutions. All you can do is make the decision that seems best for your family, based on the information you have.
• Flexibility: My capabilities with chronic illnesses can change daily. Likewise, the decisions you make now regarding COVID-19 can change. Schools may alter their plans in a month or two. You may find that hybrid schooling isn’t working for your family and you need to switch to remote. You may be working from home now and get called back into your office in the winter. These changes are stressful, but the more we prepare for their possibility, the more adaptable we become. If kids see adults being flexible rather than worrying and complaining, they are more likely to emulate that behavior.
• Health comes first: This is a hard one, especially when other needs like finances are so pressing, but we need to be healthy in order to work and live well. For years I tried ignoring my illnesses, pushing through my symptoms, and that just made my recovery longer. Making adjustments, taking precautions, and following protocols now will lead to less frustration and fewer restrictions in the long run.
• Self-care: This one is also hard, especially if you’re working, parenting, and teaching, all from home. There simply isn’t enough time in the day to do it all, and keep your sanity. Lyme patients feel this way when they think about being sick, missing or trying to keep up with work, taking care of family, and paying bills. But even when we’re sick, busy or stressed—actually, especially during these times—we need balance. Be sure to carve out time for whatever it is that grounds you or your kids: taking a walk, meditating, running around the backyard, reading a magazine, calling a friend. These days, it’s especially important to schedule time away from screens.
• Remember the big picture: For Lyme patients, the big picture is getting healthy, or at least well enough to thrive rather than merely survive. During the pandemic, we have to think about what we need to do to survive so that we can someday thrive. This may mean that your child falls a little behind in school now, or that you aren’t meeting every deadline at work, because you’re also trying to live a balanced life. In both situations, it’s important to focus on the long game.
• You know what’s best for you: Lyme patients are forever being told that they aren’t really sick, or that they should just do “xyz” and then they’ll feel better. But no one knows your body and your needs better than you do. Similarly, only you know what’s best for you and your family during this pandemic.

The good news about the current situation is that we’re all in it together. Lyme patients usually have a fear of missing out, because they’re the only ones missing school, work, or social events. Now, we can find comfort in solidarity. We will get through this—together!