Lyme Lies

by Susan Pogorzelski
#MyLymeLife

How does your illness speak to you?

There it is again—that voice in the back of my mind, growing louder, crushing my confidence and making me feel worse.“You’re sick,” it reminds me. “You’re always going to be sick.”

I could close my eyes, but I’d still hear that voice. It’s like a shadow I can’t shake off. It’s there when the fatigue overwhelms me, when I can barely lift my head from the pillow to glance at the clock and see that hours have passed, but I still can’t wake up. The voice is there when the pain moves through my legs, squeezing the muscles, hurting right down to the bone. It’s there when the heels of my feet burn, when my heart flutters to its own eccentric rhythm, when the fever spikes.

“You’ll never travel again like you want to,” it says. “You’ll never go back to work like you need to or have the writing career you dreamed of.”

It’s there, the voice reminding me of everything I’ve lost, the future I could have had.

“You’ll never be well enough. You’ll never be good enough.”

Then, it grows louder still, pulling me in deeper.

“You’re helpless, useless, hopeless…”

The words are familiar. I’ve heard them before in a voice that sounds like my own. They’re the refrain I repeated for nearly a year when I was first diagnosed with Lyme Disease, when it was hard to see past the hour, never mind the day, in which I suffered. I gave into that voice, listened to those words like they were lyrics to a song stuck on repeat.

They’re right, I thought on the days when I could stay awake only for minutes at a time. I was helpless, useless, hopeless…

For months, that voice taunted me, until the day I stayed awake a little longer, until the day the pain subsided just a fraction, until the day the fever broke. It wasn’t until I began to feel better, until I began to find some reprieve from the symptoms and suffering of this illness, that the voice that had sounded so much like my own began to sing a different song.

“Be patient, dear girl,” it kindly said. “You’re so much stronger than you feel right now.”

The day I discovered self-compassion in the face of this illness was the day I learned that Lyme lies.

It lies when it tells you you’ll never get better. It lies when it tells you you’ll never be independent again. It lies when it tells you you’re without purpose in the world.

It lies when it tells you this disease is all that you are.

You are more than this disease.

This week, my recovery has had a bit of a setback. Those familiar symptoms have returned, leaving both my body and spirit weakened, leaving room for that voice to return and whisper its tale of destruction. It’s easy to let go of the self-compassion I’ve cultivated—a type of self-care, even self-preservation, that’s been necessary for my emotional healing. It’s easy to listen to the voice that wants me to succumb, to remember all that I’ve lost instead of all that I still have. But I won’t.

Instead, I’m reminding myself that I’m more than my illness, more than the sum of this disease.

I’m more than the lies that Lyme likes to tell me.

Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.