I’ve been spending a lot of time on Instagram lately, getting to know some amazing people who live with chronic illness. To increase interaction and get real-life insights from spoonies who not only live with chronic pain and illness, but discrimination and invalidation, I’ve been posting a lot of questions.
I’ve gotten back some amazing answers, and I’ve decided to turn some of these topics into blogs. I can talk about my own experience until I’m blue in the face, but it’s important to hear from the spoonie community at large, and I’m honored to use my website as a platform.
These are 5 common misconceptions about chronic illness as told by the spoonies of Instagram.
(Note: Some quotes were edited for length and content.)
- “You can do normal things but still be disabled.”
I’ve said this so many times on this blog, in forums, and on social media. It’s 100 percent true. People living with chronic illness can get out there and kick it with the best of them sometimes.
You may see us out, smiling, laughing, dancing, and socializing, and the thought, “There’s no way that person is disabled” may cross your mind.
That’s where you would be very wrong. Not only are appearances deceiving, but chronic illness has its ups and downs. We can have a lot of energy one day and zilch the next. We might have a couple of good days and then be down with a flare for a couple more.
In short, the health of a spoonie is about as predictable as today’s climate.
Also, and this is really important, we need a LOT of time to recover after using our spoons (units of energy-explained below) on having fun like that. In other words, we pay the price, but we rarely allow you to see that side of us.
- “We are not faking!”
This. This. This! Just because someone is young, or looks healthy, or acts “normal” does not mean they are faking their chronic illness! This misconception has always annoyed me the most.
When I was in my 20s, I was constantly told I was “too young” to have this disorder or that.
Remember, you only get a snapshot of a person’s life whenever you see them (unless you live with them, and even then, you work and sleep, so you never truly see everything).
I don’t know the statistics. I wish they existed. All I know is, very few people are going to go to the trouble to make up a disorder that isolates them from most of humanity and makes others treat them like liars.
- “I am NOT a drug-seeker.”
This is another one that really bothers me. You can’t put people who struggle with addiction and those with chronic illness into the same box. Granted, someone with a chronic illness may also have a substance abuse problem, but the two are NOT mutually exclusive.
There are plenty of people who use opioid pain relievers just to get through the day. The stuff does not make them high, it helps them function. In these cases, it’s not recreational, it’s a necessity just like heart medication or insulin for diabetes.
Maybe if more people thought of pain-relieving drugs in this manner, there would be less stigma.
- “I can look awesome and still feel horrible.”
Oh, yes. Those of us with chronic illness put a lot of effort into looking as healthy, happy, and “normal” as possible.
We want the exact opposite treatment of what some might think. We don’t want attention. We want to blend in because we’re too tired to explain, we don’t want your pity, we don’t want to be questioned, and we don’t want to be signaled out for any reason.
(These things cost us spoons!)
- “Just because I’m not doing something right now doesn’t mean I’m lazy.”
This is another unfortunate misconception about chronic illness that won’t go away. People with chronic illness only have a certain amount of energy to expend on each task each day.
In “The Spoon Theory” written by Christine Miserandino, she compares a drawerful of spoons to units of energy. Let’s say healthy people always have 100 spoons available to them each and every day. That’s a lot of expendable energy!
Spoonies, on the other hand, may wake up with 30 spoons on a great day, 15 spoons on an OK day, and 5 on a horrible day. Now, understand, spoons are used for everything, even tasks that would seem minimal to a healthy person.
This means getting up, taking a shower, brushing your teeth, making coffee, making breakfast, getting dressed, making up, doing your hair, feeding the dog, feeding the kids, feeding yourself, driving to work, working, socializing with coworkers, eating lunch, going to meetings, walking to the car, getting stuck in traffic, getting home, cleaning up the dog poop on the carpet, taking the dog for a walk, making dinner, feeding the dog, feeding the kids, taking the dog for another walk cause you’ll be damned if you have to clean up another poop pile, taking a shower, making love to your partner, and going to sleep.
Now, that’s 27 spoons, right? Well, if you started with 30, you might just squeak by before collapsing if nothing else happens that day. (Plus, certain activities take much more than one spoon.) So, most of the time, those of us with chronic illness are stuck in the red (read: negative spoons) every day.
We’re not being lazy. You didn’t see us an hour ago. We need to rest, recharge, and refill our spoon drawer!
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