By Jennifer Crystal
The recent celebration of Valentine’s day got me thinking about past posts I’ve written about the holiday. I’ve written about various matters of the heart: about Lyme carditis and about Valentine’s Day as a celebration of self-love. Whether you have Lyme or not, it’s important for everyone to literally and metaphorically care for their hearts, and for themselves. But what about learning to love an illness that has stripped you of so much? That’s harder but, as I’ve learned, equally important.
It’s hard to love an illness that knocked me off my skis and circumscribed my life for years. An illness that left me unable to work or care for myself. An illness that beat me down, let me get up for a minute, and then beat me down even harder with exhaustion and migraines and fevers and joint aches. What’s to love about such a disease? I spent a long time hating it.
The problem was that by hating my illness, I was hating a part of myself. For many years I just wanted the illness to leave me, so I could wipe my hands of it and move on with my life. After the first year of intense treatment, I thought I’d reached that point. I left my sick bed, went back to work, and moved to a place where I could get back on my skis.
But I never did, at least not that season. Instead, I relapsed back to ground zero and had to start the whole maddening convalescence process over again. At that point, I couldn’t have hated tick-borne illnesses more. I couldn’t have hated ticks more.
During that low period, a friend sent me an email that said, “If I ever find the tick that did this to you, I’m going to wring its little neck!”
And that’s when I realized something. It was the tick that did this to me, not the Lyme. Yes, the diseases of Lyme, as well as Ehrlichia, and babesia were making me feel awful, but they hadn’t spontaneously arrived in my body; they’d been transmitted by a bug smaller than a poppy seed. If there was anyone to hate in this situation, it was that bug (or bugs, as tests showed I may have had more than one tick bite). The ticks were long gone, but the diseases were a part of me; if I hated them, then that meant I hated a part of myself.
And so during relapse, when my illnesses were making me feel worse than ever before, I started to love them. It wasn’t easy. But as I’ve written about before, it was that relapse that made me realize what it really means to have a chronic illness. I had to accept that I was never going to be able to wash my hands of Lyme and walk away from it. I was never going to get back to my old, Lyme-free life. The tick-borne diseases were coming with me, and if I wanted to truly move forward, I would have to willingly or not bring them along.
Luckily, I was seeing a wonderful therapist who helped me not only to love my illnesses but to love myself. This didn’t just mean loving parts of myself that I liked, such as my sense of humor or my ability to connect with people. I also had to stop hating on the parts of myself I didn’t like, such as my insecurities, my tendency to over-analyze, or my perfectionism. I had to stop judging my body every time I had a setback.
Tick-borne diseases weren’t my fault. The relapse wasn’t my fault. And the more “negative” aspects of my personality-there wasn’t fault in those, either; they were just part of who I am.
Recognizing and working through those harder parts of myself helped me to become a better person. Do I still overanalyze? Sure. Am I still hard on myself? Absolutely. But I’m more self-aware, and I’m gentler on myself when I see I am falling into old patterns. Lyme gave me the opportunity to learn these lessons, and I love it for that.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at firstname.lastname@example.org
The title bugs me as I WILL NEVER LOVE LYME, but I get her point. Hating ourselves – especially our sick selves is a sure path down a vortex of no return and doesn’t help us heal – not a bit.
In my case I initially struggled with those wonderful “health nut” people who tried educating me on nutrition, herbs, and alternative treatments – making sure they threw in a healthy dose of fear of antibiotics and insinuating that I did something or didn’t do something to deserve this…..you know…. like I’m solely responsible for a faulty immune system setting myself up for illness.
What they don’t know or care to even inquire about is I was a “health nut” of “health nuts” before becoming ill. My husband and I ate healthily, hadn’t taken antibiotics our entire adult lives, and used many alternative and supportive things for immunity. He ran 10K’s for fun. I walked everyday for an hour on top of other things. I taught fitness classes for crying out loud! I also have a Master’s degree in physical education and know a thing or two about the human body.
When I meet these people today and hear their schpeel, a certain fire will rekindle in my eyes. WATCH OUT! WOMAN ABOUT TO SET YOU STRAIGHT IN WAYS YOU DIDN’T KNOW WERE POSSIBLE!
Don’t get me wrong, I’m all ears on all things health and love to learn about them; however, heaping guilt on a very sick person fighting a smorgasbord of pathogens – many tweaked in a lab for biowarfare purposes that are designed to persist and pervade, is the absolute wrong thing to do. This illness will sift you like wheat and in desperation will force you to learn and adjust accordingly. Frankly, patients with Lyme/MSIDS ought to get honorary PhD’s in my estimation. They know more about true health than many doctors! Some of the most beneficial additions to my treatment have come from patients.
But now, when those judgmental people start, I cheerfully say one phrase,
“Would you treat Ebola solely with herbs and supplements?”
That usually shuts them up.