The Monster
If I had to describe my chronic illness as a creature, it would be a grotesque,
twitchy hare with a hyena head and spider legs. It’s the stuff of nightmares.
Can you imagine it? A blind, lifeless eye staring back at me while venomous
drool drips from its maw? It’s a horror show waiting to happen.
But let me tell you, this monster isn’t just a figment of my imagination. It’s a
part of me, and it’s been with me since 2020. It’s like a trapdoor spider,
always lurking in the shadows, waiting for the perfect moment to strike. And
when it does, it’s like being pulled into a dark, underground burrow, helpless
and paralyzed as venom courses through my veins.
But that’s not all. This monster is also part hyena, mocking me with its
taunting laughter, as if my suffering is some kind of sick joke. The hyena
head also represents the crippling brain fog and pounding migraines that
follow me around like a…..
And then there’s the blind eye. It’s a reminder of the sudden, inexplicable
blindness that sometimes comes over me, leaving me lost and disoriented in
a world that doesn’t make sense. It’s like being trapped in a nightmare you
can’t escape.
But it’s not all darkness and terror. There’s also a part of this monster that’s
like a rabbit, constantly poked and prodded, experimented on like a lab
animal. It’s a strange, confusing existence, like living in a world that doesn’t
quite understand you.
In the end, this monster isn’t evil or malicious, just misunderstood and
unpredictable. It’s a part of me that I can’t escape, no matter how hard I try.
But by drawing it out and sharing it with the world, I hope to shed some light
on the reality of living with a chronic illness.
Ella is 16 years old and the artist of the drawing.
This poem was submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 9th, 2023.
#MillionsMissing #MillionsMore #Hope4MECFS #Hope4FM #Hope4LongCOVID

Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career – the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.