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What are Spoonies? TikTokers dealing with 'invisible illnesses’ post upsetting videos to get Internet validation

Some spoonies suffer from MS and Crohn’s disease, while others have rarer illnesses that are harder to diagnose such as polycystic ovary syndrome (PCOS)
PUBLISHED SEP 8, 2022
A 2003 TikTok phenomenon called 'Spoonies' has resurfaced where people suffering from chronic illnesses post videos of themselves crying (@anotherdaywithra, and @berkleycollins/TikTok)
A 2003 TikTok phenomenon called 'Spoonies' has resurfaced where people suffering from chronic illnesses post videos of themselves crying (@anotherdaywithra, and @berkleycollins/TikTok)

A 2003 phenomenon, or trend per se, is resurfacing on TikTok which shows teenagers with invisible chronic illnesses crying or lying on hospital beds. The teens are posting upsetting videos of themselves on the social media platform which generate thousands of likes as part of a new community called 'Spoonies'. Over time, thousands of influencers have joined this community where the users can be seen sobbing uncontrollably or lying lifeless on the hospital bed. This content is responsible for amassing millions of likes over time and is commonly known as the 'Spoon Theory'. 

TikTok influencers, who are avid spoonies, are also encouraging their followers to lie to their doctors in order to get whatever prescription they want. In the wake of the recent growth of this phenomenon, some experts have come forward to talk about it and address the issue. It is being said that while functional disease is a real and chronic problem, it is often not the one teenagers think they have. A neurologist at Rush University Medical Center, Dr Katie Kompoliti, told Commonsense News, "It’s generated by anxiety in most cases or another comorbidity, and then propagated by the ease of TikTok."

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The community is booming. So far, there are nearly three million tagged Instagram posts and TikTok videos garnering nearly 700 million views. The Daily Migraine’s Lisa Jacobson explained the concept in her own words and said, "Because we look healthy on the outside, one of the greatest challenges we have is explaining to others how a person who looks so good can actually feel sick or be in pain. They do not understand the freedoms many of us have lost."

Sophie Cowley, working with the Huffington Post, wrote, "A spoonie can refer to any individual who suffers from a chronic illness. These illnesses are often invisible; to most people, spoonies may appear healthy and able-bodied, especially when they are young." The members of this community even compete with each other to decide who's the most unwell of them all.

(TikTok/@amaniwrites)
The community of Spoonies is growing by the day as people get together and discuss their struggle with chronic pain (TikTok/@amaniwrites)

What is Spoonies?

The term 'Spoonie' was coined by a blogger in 2003 as a nickname for the infamous 'Spoon Theory'. The word spoon here equates to energy. It originally came from an essay by chronic pain warrior Christine Miserandino who described her efforts at helping a friend understand what it’s like to navigate life as someone with a chronic illness. The analogy was quickly famous among the chronically ill as it made it easier for them to explain to their close ones the rigors of living with pain and persistent fatigue. 

Spoonie (TikTok/@classafras)
Spoonies post videos of themselves when they are emotional to show people the reality, and this content has been getting millions of likes on TikTok and other social platforms (TikTok/@classafras)

The theory means that healthy people have unlimited spoons, and the spoonies only have a few and have to be strategic about how they use them. Some spoonies suffer from MS and Crohn’s disease, while others from rarer ones that are harder to diagnose such as polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis and postural orthostatic tachycardia syndrome (POTS). A Facebook page called 'SpoonieStrong', which has more than 100,000 followers, is run by Stephanie Wilson, a childhood cancer survivor, and chronic illness warrior. She was diagnosed with Rheumatoid Arthritis in 2013.

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