by Robin Mason

“It’s easy, see?” My friend showed me for the ridiculous-th time how easy it was. No matter how I tried to explain that I get how to do the thing, but I cannot physically do it. The it in question was to unlock a chain on the gate, but because of Rheumatoid Arthritis, my hands do not have the strength to twist and turn just so to get the darn thing unlocked.

And my friend didn’t get it.

So many people are like that. Silent disease trolls through unsuspecting bodies, wreaking havoc, and no one is the wiser for it. Even family members don’t get it, or at best, they forget and leave us in the dust.

My fatigue and weakness feel like the flu minus: the malaise of no energy, the struggle just to walk to the bathroom, or to the kitchen, yeah, I get that a lot.  Not as much as I used to, but when it hits – it just SUCKS.  Little by little, more of what I had taken for granted, turning shower knobs, opening a Coke (I had to adapt to use pliers to open), lifting ANYthing – suddenly I was limited in activities that I once took for granted.”

“But You Don’t LOOK Sick”

Can’t say anyone has ever said that to me but I see the memes all the time. And more than the words, I get “the treatment.” The “hurry up” huff, the “left behind” while friends cruise on ahead, holding back because I can’t climb those stairs or I just need to sit and rest for a minute. I try to keep up, to do my best to act normal and participate in activities. But my body is not normal. My body betrays me and lets me down.

The Spoon Theory

“The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness…

The term spoons was coined by Christine Miserandino in 2003 in her essay “The Spoon Theory.” The essay describes a conversation between Miserandino and a friend. The discussion was initiated by question from the friend in which she asked a question about what having lupus feels like. The essay then describes the actions of Miserandino who took spoons from nearby tables to use as a visual aid. She handed her friend twelve spoons and asked her to describe the events of a typical day, taking a spoon away for each activity. In this way, she demonstrated that her spoons, or units of energy, must be rationed to avoid running out before the end of the day. Miserandino also asserted that it is possible to exceed one’s daily limit, but that doing so means borrowing from the future and may result in not having enough spoons the next day. Miserandino suggested the spoon theory can describe the effects of mental illnesses as well.

Source Widipedia: https://en.wikipedia.org/wiki/Spoon_theory

This is classic. Miserandino’s friend can neither see nor understand what she goes through. To the friend’s credit, she asks—most don’t. At least not in my experience.

I’ve likened it to several different images, the most common of which is the feeling of malaise when you have the flu—but without the rest of the flu symptoms. It gets old, day after day of feeling tired, not knowing from one day to the next whether I’ll have energy or feel like I’m drugged.

And it’s harder still explaining to people, “I can’t today.” And so I usually don’t; people get tired of hearing me “whine” that I’m tired or having a bad day. A bad day to them is traffic or a boss on the warpath.

People want visible, tangible answers, but those of us inflicted with the silent interlopers don’t have answers. Not only is the disease silently ravaging my body, it is silently putting up invisible barriers. “Don’t ask Robin; she won’t be able to go anyway…” Do people really say that? I don’t know. But I wouldn’t be surprised to find out they do—and why I cherish all the more the friends who do call and include me in plans.

What, then, is the answer? Awareness, certainly. And education. I, as one with a silent disease, have to take the responsibility to educate others—perhaps there’s my own Looking Glass Lies story incubating somewhere in my mind and waiting to be written. It is, after all, what I do best.

Do you suffer from a silent disease?

Robin E. Mason has been writing since 1995, and began working in earnest on her debut novel, Tessa, in 2013.  Meanwhile, she cranked out a few dozen poems, made countless notes for story ideas, and earned her BFA in Interior Design.  Having lived with depression for many years, Ms. Mason struggled with identity, and her characters face many of these same demons. She has three novels published, Tessa, Clara Bess, and Cissy which are available on Amazon. She is currently working on The Tilting Leaves of Autumn, Book Two in her new series, Seasons. Learn more about Ms. Mason on her website.

 

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3 Comments

  1. Melissa Henderson

    I suffer with significant arthritis in my neck and spine. Some days are great and some days are not. Sometimes people who have not felt the pain of arthritis have a hard time understanding.

    Reply
  2. Deena

    I have battled with Chronic Fatigue, Fibromyalgia, IBS, Reynauds, and all of their kissing cousins for over 10 years.

    Reply
  3. Andi

    I have the worst form of RA, ankylosing spondylitis, and for the first time in years I have more energy, and less pain. The worst part for me has been when I catch a cold, or like recently when I had a wisdom tooth pulled it took me longer to heal because this disease attacks my body. And to top it all off I have epilepsy. I’ll be sharing about that in a few weeks here.

    Reply

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