“Should” is one of my least favorite words. Society gets us caught up in the idea of what we “should” be doing—we should work more, exercise more, take on more—and that puts a lot of pressure on even the healthiest person. For Lyme patients and those with chronic illness, the pressure of the word is even stronger, because we often hear—or tell ourselves—messages such as “You should be better by now” or “You should be able to walk to the bus stop; it’s only one block away.”
Healthy or sick, the idea of what we “should” do doesn’t always match what we can do, and that discrepancy can get us in trouble. Even if a Lyme patient is physically capable of walking to the bus stop, it doesn’t mean they should, because that walk might take up all their energy for the day. If they’re taking the bus to school, walking that block could preclude them from participating in class.
The line between “can” and “should” can be blurry, and therefore we might assume that the inverse—the line between “can’t” and “shouldn’t”—is also blurry. However, for Lyme patients especially, the distinction between these words couldn’t be more definite, and that can be hard for healthy people to understand.
In my own healthy days, when I said I couldn’t do something, I didn’t necessarily mean it literally. If I was invited to a party and replied “I can’t go,” I didn’t mean I was physically incapable of getting there. Sure, sometimes I had actual scheduling conflicts, but often when I said I couldn’t do something, I simply meant I didn’t want to. “I can’t attend the party” really meant “I don’t want to attend the party.”
In those days, I had agency. I had a choice over whether I wanted to go out or stay in. If I didn’t want to do something, all I had to say was that I couldn’t.
When I got sick with tick-borne illnesses, I lost that agency. Bedridden and battling joint aches, exhaustion, insomnia, and migraines, I had no choice about doing something fun; I simply couldn’t, because I was too sick. When someone invited me to a party and I said “I can’t”, I literally meant, I cannot get out of bed and physically walk to the car, let alone stand in a crowded room and socialize.
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Unfortunately, sometimes people interpreted me saying “I can’t” as “I shouldn’t”. They figured all I needed was a little convincing and encouragement. They’d say things like, “Oh come on, it’ll be good for you to get out.”
I agreed. It would have done me good for me to be able to socialize. However, that didn’t mean I could will myself to be able to do so. I was just as disappointed as the person trying to convince me, but simply having the desire to do something didn’t give me the capability to execute that aspiration.
I wished more people understood that at the time, but I also can see why they couldn’t. Having never experienced tick-borne illness themselves—at least not at a late neurological stage—they didn’t get that “can’t” for me was a literal word.
I write this now to try to make the road a little easier for current Lyme patients, and to try to help healthy people understand that when that patient says they can’t do something, they don’t mean they shouldn’t. They mean they really, truly can’t. The patient doesn’t need pushing; they need empathy. They need you to say, “I’m so sorry you can’t, but I respect that you know better than anyone your own body’s limitations. How about I skip out on the party, too, and come sit with you?”
Now in remission, I’m physically capable of doing much more than I could when I was really sick. Nevertheless, I still have to respect my body’s limits. Sometimes, even when I can go to a party, I shouldn’t, because I know I have to pace myself. I’m more cognizant of my word choice, though. I don’t say I can’t do something when I physically can do it. Instead, I say I shouldn’t, and explain why.
In general, the people in my life are wonderfully understanding of my needs, and they don’t push me when I say I shouldn’t do something. If someone who didn’t know me well were to push me, though, I might direct them to this article.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at: firstname.lastname@example.org.