If you experience persistent pain or fatigue because of a medical condition, you’re definitely not alone. In fact, an entire community of people known as spoonies has gathered to support each other as they face daily difficulties completing basic life tasks.

The term “spoonie” came from an essay by chronic pain warrior Christine Miserandino that described her efforts at helping a friend understand what it’s like to navigate life as someone with chronic illness.

The chronically ill eagerly adopted the term and its useful analogy for helping friends and loved ones better understand the rigors of living with pain and persistent fatigue. Today, spoonies unite through the social media hashtag #spoonie, writing blog posts to inform the public, and generally working to raise awareness at the grassroots level.

How did the term spoonie come about?

Christine Miserando, a woman with lupus and author of the blog ButYouDontLookSick.com, wrote an essay outlining the spoon theory and posted it online. Readers responded well to its simple, apt description of what it’s like having to make tough choices about which life tasks to leave undone based on limited energy levels and feelings of pain.

The essay described Miserando as she sat with a friend in a diner, and the friend asked what it was like having lupus. Miserando began talking about pills and doctors’ visits and symptoms, but soon realized her friend was seeking a deeper explanation. What was it truly like to live in the body of a person with a physical illness? The question confounded Miserando until she looked around the dinner and spotted spoons lying on tables.

Grabbing a fistful of spoons, Miserando gave them to her friend and asked the friend to list tasks from her day. As the friend began to talk about getting dressed for work in the morning, Miserando grabbed spoons from her hand.

The abrupt action illustrated two things, Miserando wrote. First, each spoon represented energy, with various tasks depleting the day’s reserves. Second, the day’s energy reserves aren’t always in the patient’s control. Energy might be lost because of a flare-up or impacted because of something else that happened that day. Miserando writes:

“I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question.”

Although Miserando happened upon the spoonie theory by happenstance, it has taken on a life of its own since that night. Her essay spread like wildfire throughout the chronic illness community and the spoonie culture was born.

Criticism of spoonie theory

Of course not everybody agrees with this analogy, even spoonies themselves. A blogger Duncan Cross wrote about how although many of his friends identify with the name, he does not.

Cross says he likes the analogy, even calls it clever, but he believes it falls short of a truly comprehensive explanation of what living with a chronic illness is like. He writes:

“It is too pithy—it only glances against a real understanding of illness. It is too facile, and seems as likely to prevent a meaningful conversation about illness as it is to start one.”

Cross says the chronic illness community owes themselves more. They owe it to themselves to start meaningful conversations about life with constant unease instead of falling into fables that are too easy.

Blogosphere publicizes spoon theory in hopes of raising awareness

Despite the occasional detractor, many other spoonies relish the idea of having a way to help others understand their plight. And the term spoonie has also evolved into a highly efficient way for people experiencing various chronic diseases to connect over social media through the use of hashtags and specific support groups.

The characterization unites people who live with a variety of disorders ranging from fibromyalgia to autoimmune disorders, but who experience similar difficulties trying to live life to the fullest.

Other spoonie bloggers have worked to publicize the theory in hopes of raising awareness and combatting the feeling of invisibility that often comes from living with a chronic condition.

Writer Sophie Cowley, for instance, has lived with a constant headache for about two years. She blogs on The Huffington Post:

“These illnesses are often invisible; to most people, spoonies may appear healthy and able-bodied, especially when they are young.”

That false perception contributes to one of the most difficult parts of being a spoonie, Cowley writes, because people find it very difficult to understand why a person can’t function the same as someone without a chronic condition. They look the same, people wonder. What’s wrong with that person?

Cowley says that while she used to hide her discomfort, she now tends to reveal her spoonie status, which she calls “coming out.” Letting people know is often helpful because then she doesn’t have to explain herself for missing social outings or being quiet, she writes.

A downside to being so public is the constant telling of her story, which includes chronic subjective dizziness and fatigue syndrome as well as the ongoing headache. And then there’s the well-intentioned but annoying unsolicited advice. People tend to offer possible treatments or proclaim the ol’ “but you don’t look sick!”

Connecting with the spoonie community

Tapping into the community of spoonies worldwide is a wonderful way to interact with others who are experiencing many of the same trials and tribulations as you.

If you like connecting with people through blogs, be sure to check out the blogroll listed on the Daily Life With Chronic Illness Tumblr. You might also check all the posts tagged with spoonie on Tumblr, which is a social media site that acts like a blog but combines elements of Facebook and Twitter. People have individual pages and can post short thoughts, long thoughts, pictures, quotes, mp3s, or whatever else they feel expresses their current mood.

Connecting with spoonie posters on Twitter is also easy by searching for #spoonie or #spoonieproblems. Find and follow accounts you resonate with and connect virtually. Inspire and support each other’s journeys.

Hashtags are also searchable on Facebook. Try entering #spoonie or #spoonieproblems into the search bar. You can also join in the social platform’s communities like Spoonies United. Search for additional groups by typing “spoonie” or other, related terms into the search bar. Then, you can filter results by posts, people, or pages.

Do you identify with the term spoonie?

Image by Andrew Gustar via Flickr

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