Despite the title of this piece, I cultivate not screaming. I’m trying to ride the waves of life’s disappointments and frustrations with quiet patience.
That said, I have days when I want to scream “Enough is enough!” This piece is intended to be partly lighthearted and partly an honest depiction of the nitty-gritty of being chronically ill (which includes chronic pain). Here are the top ten reason you might hear me scream:
I don’t like to turn the TV on during the day, but some days, I’m too sick or in pain to do anything else. What do I find? TV that's so bad, it makes me want to scream.
“Take this medication and you can do whatever you want again.” “Buy this exercise machine, and you’ll stay young forever.” “Eat this food and never have medical problems again.” Sigh. (I’m sighing because I’m trying not to scream.)
Before I got sick, I loved doing this because I got an extra hour that first day. Now turning back the clock plays havoc with my body as it struggles to handle the extra hour of feeling lousy. I never thought I’d rather lose an hour in my day than gain an hour, but there you have it.
At least I’m able to say “almost zero.” For many people who are chronically ill, it’s truly zero and the isolation can be devastating. At least if we scream, we won’t bother anyone because no one will be there to hear us.
My symptoms build in intensity as the day goes on. As a result, when it comes time to turn off the lights, it’s hard to fall asleep. When I do manage to drift off, I’m rarely able to sleep through the night. And, on those special nights when I actually sleep well, I often wake up just as unrefreshed as if I’d had a bad night’s sleep. Scream!
Or, as it was known when I lived in Winnipeg, Canada: Prairie Madness. The expression traces to how hard it was when pioneer families were forced to stay inside for months at a time during the winter. Many of us have to do this year-round.
People often think that staying home must be wonderful, but they only think that because they’re not forced by pain or illness to do so. I suppress the scream out of kindness to them: they simply don’t know how isolating and hard it can be because they’ve never had to do it.
Number 4: Indifferent doctors
I’ve written a lot about doctors both in my books and in these articles. What makes me want to scream is (with rare exceptions) their complete indifference to an illness that’s kept me mostly housebound and often bedbound for almost 16 years.
As some of you know, in 2014, I was treated for breast cancer. The anti-recurrence medication exacerbates the symptoms of my pre-existing illness, myalgic encephalomyelitis, also known as chronic fatigue syndrome. Despite this, the medical oncologists I’ve seen (with one exception and she’s moved to another city) don’t care. They want me on those medications and that’s that; it’s not open to discussion. At least my primary care doctor understands what I’m going through and is willing to engage with me on how to make the best choices, given my situation.
Because I look fine, others assume not sick or in pain. The people who can tell that I’m disabled are those who see me all the time. My husband can tell immediately what kind of day I having. This is related to the next scream-worthy item.
The reason this makes me want to scream is that it has a chilling effect on my behavior, meaning that even if I can do something, I might not do it so that people don’t misunderstand that my having done one thing doesn’t mean I can do everything.
And the Number 1 reason that chronic illness can make me want to scream…
Why did I write this word three times? Because it’s not just one symptom that can make me what to scream. It’s the parade of symptoms that make it hard to function at all—leaving me with, yes: bad TV, bad commercials on TV, and cabin fever.
Thanks for reading my rant. In the comments, I hope you'll share with us what makes you want to scream.
© 2017 Toni Bernhard. Thank you for reading my work. I’m the author of three books.
Visit www.tonibernhard.com for more information.
You might also like “Ten Things I Didn’t Know Before I Got Sick.”