HURT FEELINGS
The Dis-ease of Disease
Those of us with chronic pain struggle with constant stress
Sometimes my wife asks me, “How ya doin’?”
“I’m fine,” I lie.
After more than 35 years of marriage, we can read each other’s body language. She knows me well enough to tell when something is wrong. I understand that she worries about me, but I don’t want to burden her yet again with my true feelings.
Most of the time, I am not fine.
My chronic pain is a relentless opponent, an all-consuming ache from head to toe, punctuated by severe stabs in spots like the lower back, hands, and neck. My body is a mass of inflammation because a rare genetic disease called Multiple Epiphyseal Dysplasia (M-E-D) caused my joints to deform and has led to severe osteoarthritis. Over the years, I’ve had both ankles fused and both knees, hips, and shoulders replaced.
Among other emotions, my disease causes dis-ease. The derivation of the former, as in an illness, comes from the 14th-century French combination of des, “without, away,” and aise, “ease,” so it literally meant “without ease.”
That’s an apt definition of what I feel most of the time: a lack of ease or dis-ease.
I envy able-bodied people who go through life seemingly free of anxiety about their movements, like climbing stairs, walking the dog, or parking far away from a movie theater entrance. These people don’t have to think about whether their next move will be painful.
In contrast, I spend a lot of time sitting still in my La-Z-Boy, about the only place I feel comfortable, but still the aches and pains lurk in the background. In lighter moments, I imagine launching a lifestyle brand called:
“Sedentary: For Those Who Hurt Too Much to Move.”
I hurt, but my discomfort goes beyond body pain to psychological distress, what I call “hurt feelings.” (I’m writing a book about those emotions and welcome fellow sufferers to share their stories; see bio below.)
The constant worry makes it hard to truly enjoy life. I spend so much time and energy enduring the physical sensations and considering how to mitigate them that I often cannot think straight. I can’t turn it off. It’s an irritating, deeply frustrating buzz in my body.
I live in a state of stress and anxiety. For me, it’s like having persistent tinnitus, also called ringing of the ears. It’s a constant hum of hurt. My chronic pain is a continuing companion messing with my mind.
There’s science behind these feelings. Brian Distelberg, Ph.D, MA, and Director of the Behavioral Health Institute at Loma Linda University Health, explains:
When someone experiences pain, the body releases anxiety and stress hormones. This can come in handy if a person is injured or in a situation where they need to get out. However, when we look at an individual who is constantly experiencing pain, then their body is also constantly producing these toxic hormones as well. Stress isn’t an intangible thing — it’s a damaging chemical to the body when prolonged.
This damage interferes with my life in multiple ways.
For example, my body and mind are perpetually on point. My jaw constantly clenches, bracing against the pain. My muscles are always taut, ready to spring into action, even when I’m not moving. My stomach and GI tract roil with fear about what’s to come — in the short term, with the next step, and in the long term, with how much worse I’ll be as I age.
My brain is on guard all the time, causing me to wince when nerves send it pain signals. I get nightly headaches right behind my right forehead. I imagine that’s all due to those stress hormones flowing through me, heightening my overactive Spidey-sense.
In short, I am in a perpetual state of fight, flight, or freeze — an ancient instinct that saved humans from threats such as lions, tigers, and bears (oh my). When I walk with my HurryCane (“As Seen on TV”), I look down for hazards, calculating my next step, and fretting that taking it will sting.
You can miss a lot of life when you’re always looking down.
I tell myself to relax, which is kind of an oxymoron because you can’t force yourself into a state of bliss. I can’t just convince myself to take it easy, despite years of therapy focused on reframing my thinking. I’ve tried meditation and deliberate breathing to no avail; the anxiety prevents me from quieting my mind.
It’s like anticipating a jump scare in a Halloween movie: Pain stalks me like Michael Myers. On the worst days, which thankfully don’t happen often, this fear leads to depression, hopelessness, and despair.
Battling pain means that I’m sometimes not as present for my family as I’d like to be.
When my wife tells me about her day shuttling our toddler granddaughter around town, I try to pay close attention, but am many times dragged away by my painful body and preoccupied mind. I spend so much physical and mental energy enduring the pain that I sometimes have little left over for anything else. She loves me and I love her, but my distraction creates distance between us.
I apologize to her and the rest of my family for not always being there for them.
The thing besides health and happiness for my family that I want most in life: peace of mind.
The thing I cannot ever have because of my dis-ease: peace of mind.
Don’t worry. I’m fine.
Randall H. Duckett is writing a book about the emotions of chronic pain and invites fellow sufferers to share their stories. He can be reached at randall@hurtfeelings.life. He is also the author of Seven Cs: The Elements of Effective Writing (available on Amazon); learn more at randallhduckett.com.
