by Jennifer Crystal
We are all in the Lyme battle together. Let’s be united, not divided.
In today’s divided times, we see a lot of hate on the internet. Politics have become more polarized than ever, with the right blaming the left and the left blaming the right—for what, they sometimes don’t even know. People with different political opinions shout each other down on social media. They spew invective, often at people they’ve never met. Perhaps the anonymity makes such crude behavior easier, since the perpetrators pay no social price. Even those on the same side of an argument sometimes get so frustrated that they turn on each other, using online forums as a means to express their own anger rather than engage in productive conversation.
I’ve seen the same divisiveness in the Lyme world, and not just between the two camps of the Lyme Wars. Chronic Lyme patients who fall on the same side of the IDSA/ILADS divide argue amongst themselves about treatment, testing, and whose symptoms are worse and why. I’ve seen responses to my blog posts where the person makes the same argument I’ve already made and wonders why I didn’t make it. This tells me they haven’t really read my article, reminding me of recent political “debates” where someone buys a headline hook, line and sinker without checking the facts. You can probably think of a particularly bad example without my prompting. They’re legion.
Other readers say nothing relevant to article subjects; they are simply on a rant about another related topic. If the person had asked me about that topic or read some of my other articles, they would have found that I have argued the same point in another blog post. In other words, they’d discover we’re on the same team.
I understand the emotions that feed these types of comments. Pain and frustration make all of us angry. This is especially true for Lyme patients who aren’t feeling particularly well and experience what we might call Lyme rage. That is, having a short fuse because you’re exhausted and your body is overloaded with bacteria and medicine. I’ve struggled with it myself and still do when I am having a flare-up. Fear, stress, and fatigue brings out the worst in all of us, whether we are healthy or ill. Having Lyme, especially with neurological symptoms like confusion and brain fog, only exacerbates the problem.
And the internet is such an easy place to unload with a knee-jerk reaction. We can see a headline, an article, or a comment that triggers us, and immediately we respond without taking the time to think, read, or consider the human being on the receiving end of what we say. Modern technology connects us in so many ways, but it really divides us, too, because it allows a computer screen to act as an alternative to real human interaction.
Online, many comments lose nuance and often get misconstrued. I’ve made jokes that have fallen flat in a text. I’ve said something sarcastically that the recipient has taken literally. I’ve sent emails where my intent has been misunderstood, and vice-versa. We all do this. Fast-paced, online communication is tricky, and we all have our personal stories of typed communications gone awry.
We must slow down. To take time to read the complete article before responding to it. For Lyme patients, I know this isn’t always easy or possible, but we can still take a minute to think about how we respond to someone. Generally, I believe, we have the common goal to unite, not divide. To build each other up, not put each other down.
Even when we disagree, how can we do it in a way that’s productive and keeps the common solution we seek in mind? In the “Writing the Op-Ed” course, which I teach, my students and I talk about concession and refutation. A good op-ed doesn’t preach or rant, but politely considers the other side and refutes it. Using “I” statements, an author might say,“I can see how some might feel that vaccines are harmful because of stories they’ve read online, but we also must consider the facts that are presented in medical journals. The idea is to say, “Yes, but” or “Yes, and” instead of completely refuting someone else’s stance.
Let’s remember that we are all in the Lyme battle together. We’re either sick or know someone who’s sick and we want better health for all. We want better diagnostics. We want better treatments. We want to raise public awareness. To achieve those goals, we must work together and support each other!
Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].