A supportive and educational online community exists for people with chronic illnesses. They call themselves "spoonies."

  • In Health
  • 2023-01-27 19:26:23Z
  • By Business Insider
The spoonie community is made up of people with chronic illnesses.
The spoonie community is made up of people with chronic illnesses.  
  • Spoonies are disabled and chronically ill people who identify with and use spoon theory.

  • Spoon theory describes the fluctuating levels of energy people have and use to complete daily tasks.

  • The online spoonie community offers social connection, support, and education.

Christine Miserandino coined the term "spoon theory" in 2003 while sitting in a diner with a friend.

Miserandino wanted to explain what it felt like living with lupus - a chronic, autoimmune disease. She handed her friend 12 spoons and said they represented the total amount of energy she had when she woke up every day. She could not get more spoons - just like Miserandino couldn't get more energy.

Miserandino then explained that basic daily tasks, like getting up, preparing and eating breakfast, and getting dressed would diminish the supply of spoons. This meant that she had to give careful thought to what tasks or social activities to engage in each day.

From there, spoon theory was born, and today, the idea has grown in popularity, sparking a supportive online community around those living with chronic illnesses or who are disabled. They call themselves "spoonies."

Spoon theory found a lot of support online

Dawn Gibson is often credited with starting the #SpoonieChat community on Twitter in 2013 to reduce isolation among its members and bring people together.

Now, there are hashtags and sub-communities of spoonies in every corner of the internet - on social-media platforms and on websites dedicated to patient education.

The online community is made up of spoonies who self-identify and may have a range of diagnoses, such as Crohn's disease or endometriosis. The online community also represents neurological identities and divergences including autism and ADHD.

Spoonies turn to these helpful online platforms for education and a sense of community

Aideen Blackborough has cerebral palsy and psoriasis. She often writes about her experiences with both illnesses on Twitter and on her own website.

"It brings comfort connecting with other people who really understand what it's like," she told Insider.

Maia, who asked to only be identified by her first name and is known as Barbie Advocates on TikTok, has a chronic illness. She uses her platform to make information about chronic diseases more accessible and to give patients power.

"I started making content during the pandemic because public-health communications were so polarizing and ineffective," she told Insider. "I 'de-jargon' policy, reports, news, and advocacy in TikTok videos."

In many ways, the spoonie community has helped people better understand and make sense of their diseases.

"When I had my feeding tube, I was sent home from the hospital with the wrong information and no help. I didn't know what was normal or what I should worry about," Maia said. "My friends who have feeding tubes who I met on social media provided the answers and the care that the health service should have."

Those who are disabled or have chronic illnesses may find that doctors and those around them don't take any pains or symptoms they experience seriously. Shae Eccleston, a self-described spoonie with endometriosis and a number of other illnesses, said a doctor told her she just had a low pain threshold for years when her periods got extremely painful. But one day, she collapsed.

"I was rushed to the hospital, had emergency surgery, and was told, 'Wow, you must have been in so much pain. Your pain threshold is high,'" Eccleston told Insider. "I have been mistreated, dismissed, misdiagnosed, and have received a lack of appropriate care for the last 30-plus years."

Eccleston said the online spoonie communities offered her the validation she wasn't getting anywhere else.

Medical professionals also recognize the importance of the spoonie community

Nancy Petersen, a retired RN and the founder of Nancy's Nook Endometriosis Education, said she sees some physicians refer their patients to the online spoonie community for basic endometriosis education.

"There has been a shift in some MD attitudes toward online communities, where the groups are putting out good-quality information," Petersen told Insider. "Medical professionals now send their patients to online communities for basic education."

Petersen said this means doctors' visits for these conditions can run much more smoothly now. Instead of starting with basic education on the disease, doctors can quickly move on to planning. This saves time for both patients and physicians, Petersen said.

Cindy Mosbrucker, a nationally recognized expert in the minimally invasive excision of endometriosis, agreed.

"The Nook is essential for patients with endometriosis in order to educate them on appropriate care and to help them find good, capable surgeons," Mosbrucker told Insider.

Laura Wallis is a writer and women's health and neurodiversity advocate. She has ADHD and endometriosis. Wallis speaks and writes about her experiences with both.


Leave a Comment

Your email address will not be published. Required fields are marked with *

Cancel reply


Top News: Health