What Not To Say and What To Say Instead
Part 1 of 2 “It could always be worse, right?”
Type 1 diabetes has been playing dodgeball with me since I was nine – that’s forty years and counting — and I’m the ball. It tosses and kicks as I bounce off walls or people. Sometimes people are better, because they are soft and squishy and offer hugs. And then there’re other times….
By my teens, I showed early signs of kidney disease. Nerve damage from too much sugar in my system burned my feet and prickled my, well, everything —including my eyes and unmentionables. Concerned doctors predicted my demise.
“Susanne, if you don’t get tighter control of your blood sugars, you could die by the age of 25.” These threats were uttered with furrowed brows – the type my dad used to get when I talked back to him at the dinner table. Great. Now doctors were scolding me too.
So, when my ophthalmologist said to me in my mid-thirties, “Susanne, you have stage four retinopathy and are going blind. If this happens, you’ll need eye surgery to get your sight back. It’s not foolproof and included risks, but in the meantime, we’ll do multiple rounds of laser surgery to cauterize the problematic blood vessels growing on your retinas in hopes they behave.” I freaked out. As in, ‘sat staring straight ahead at a blank TV for hours each day until I threw a frozen pizza in the oven for dinner before the hubs came home because that’s all I could manage and then I’d stare some more and then cry and then pizza and then stare some more,’ type of freaked out.
My biggest fear in life was blindness from diabetes. (Although life has since taught me there are worse things like living in constant, debilitating pain from a gastric pacer implant that starved me from the inside. Surgery to remove it gave me relief after a long two years.)
How would I live as a blind person?!? How would I live with chronic pain and kidney disease and diabetes as a blind person? Did I mention I might have MS? My insulin pump demanded continual button-pressing with instructions on the screen. Injecting my pump canula every three days would be a whole new challenge. My continuous glucose monitor also needed inserting — a finnicky process every ten days or so. How would I discover new fashion trends and apply my makeup?! I could see my independence dripping to the floor in my tears as I anticipated living life in the dark.
That’s when a friend said, “Things could always be worse, right?”
Whoa. I mean, sure, my previous brain surgery was bad. And the death of my brother-in-law from a boating accident induced some trauma. And yeah, innocent mothers lose children in drunk-driving car accidents and earthquakes kill tens of thousands of people. I know this. Even so, I’m scared. I’m drowning in quicksand over here and can’t deal.
‘Sticks and stones will break my bones, but words will never hurt me.’
Oh, but they do.
Phrases like, ‘Think of all the things you have to be thankful for’ or, ‘Stay positive’ or, ‘Everything happens for a reason’ are, I’m sure, meant to be helpful. They’re not.
So, what’s the problem?
First, these phrases are dismissive.
They minimize what a person is going through. Even if you wouldn’t find blindness difficult, I certainly would. (I actually went blind in each eye separately and that was hard enough. Vitrectomies in each eye were necessary to restore most of my sight.) The sick or suffering just want you to agree that what they are dealing with is hard.
Second, they invalidate the negative feelings they are experiencing.
When hard times fall upon us, we feel scared, confused and lose our spark. Depression might settle in. The world becomes dark, even if we’re not physically blind. Still, in the name of ‘positivity’, the healthy and strong tell us, “Start each day with a positive thought and a grateful heart,” as Roy T. Bennett said in www.goodreads.com/work/quotes/49604402. In essence, this tells us our ‘negative’ emotions (fear, sadness, frustration, etc.) are not allowed. Change. Your feelings are unacceptable. Why? Are we not built to feel it all?
Third, they can come across as commands.
They become another thing we are supposed to be doing as we struggle to even brush our teeth. To a sick or hurting person, the bossiness of these words lands on an already impossible to-do list. Take this day in my life: Shower. Get dressed. Make breakfast. Count carbs. Be positive! Test blood sugar. Take insulin. Call the GP to arrange bloodwork. Change the bedding. Start the wash. Test blood sugar. Take insulin. Look at the bright side! Get groceries. Take pain meds. Trust there’s a reason for it all! Head to hospital for an iron infusion. Be thankful! Rush to Neurologist appointment. Have a hypogl