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Teenage girls with ‘invisible illnesses’ are posting upsetting videos of themselves online which generate thousands of likes as part of a new community – called ‘Spoonies’.
Thousands of teens are banding together on social media as part of the movement, which also encourages them to lie to doctors in order to get the diagnosis that they want.
Posting videos of themselves crying or lying listless in hospital beds racks up hundreds of thousands of likes in some cases, with dozens of comments supporting the ‘spoon theory’.
Experts say that while ‘functional disease is a real and chronic problem’ it is often not the one the teens ‘think they have.’
Dr. Katie Kompoliti, a neurologist at Rush University Medical Center, told Commonsense News: ‘It’s generated by anxiety in most cases, or another comorbidity, and then propagated by the ease of TikTok.’
A blogger coined the term ‘Spoonie’ in 2003, giving their ‘Spoon Theory’ a nickname, claiming a spoon equates to energy.
Parts of the community also accuse doctors of ‘medical gaslighting’ them, claiming that they are dismissing or belittling their patients pain
Posting videos of themselves crying or lying listless in hospital beds racks up hundreds of thousands of likes in some cases, with dozens of comments supporting the ‘spoon theory’
Experts say that while ‘functional disease is a real and chronic problem’ it is often not the one the teens ‘think they have.’ Many of the teens post footage of themselves crying or in hospital which rack up thousands of likes
Healthy people have unlimited spoons while sick people, the spoonies, only have a few and have to be ‘strategic’ about how they use them – often by doing everyday tasks.
Some spoonies suffer from MS and Crohn’s disease, while others suffer from rarer ones which are harder to diagnose such as polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis and postural orthostatic tachycardia syndrome (POTS).
Others suffer from ‘functional disorders’ which don’t have any physical cause, cure of a set of medical tests for diagnosis.
Many of the women complain about being ignored or misdiagnosed by doctors on the app and share their rawest moments to give others an ‘insight’ into what life is like with their diseases.
Others claim that they are suffering from ‘medical gaslighting’, which includes being told by your doctor to lose weight to help your condition.
Some of them also make money off of their platforms, of which some have hundreds of thousands of followers, by using it to promote offers for glasses or supplements.
Healthy people have unlimited spoons while sick people, the spoonies, only have a few and have to be ‘strategic’ about how they use them – often by doing everyday tasks. A lot of the girls will post theor lowest moments on social media in an attempt to show how they struggle
Hundreds of thousands of people, mostly teenagers and young women, have become part of online groups to feel ‘supported’ by the community
Others join groups to discuss the negative side effects to their conditions, and often end up comepeting with each other for who is ‘sickest’
Dr. Mark Sullivan, a psychiatrist at the University of Washington Medical Center, is concerned that the internet has created ‘communities of grievance’ that led patients to adopt ‘victim mentalities.’
One woman posted on social media that her psychiatrist had told her to lose weight to ‘feel better’ and complained that it made her feel ‘in shambles’.
Members of the group rallied around, with one even offering to send the doctor an anonymous email to explain the damages of claiming someone’s weight was causing their mental or physical problems.
Morgan Cooper was diagnosed with median arcuate ligament syndrome when she found the community and described feeling as though she was ‘less alone’ with them.
She told Commonsense: ‘I had one video just called ‘I’m Sick’ and the thumbnail was me crying.
‘On Instagram, whenever I would post a picture of me looking sad, or with pills in my hand, or in a wheelchair, it would get like 2,000 likes.’
Cooper even joined a Snapchat group called ‘Sick B****s’ where they would message about the negative things in their lives.
Dr. Mark Sullivan, a psychiatrist at the University of Washington Medical Center, is concerned that the internet has created ‘communities of grievance’ that led patients to adopt ‘victim mentalities’ around their illnesses
Many of the women complain about being ignored or misdiagnosed by doctors on the app and share their rawest moments to give others an ‘insight’ into what life is like with their diseases
She claims that she felt like she needed to pad her own pills out with supplements to make her own situation seem more dire on social media and admitted to feeling ‘jealous’ of a girl who looked more ‘sick’ than her.
One of the girls she followed was promoting salt tablets which can help with the lightheadedness brought on by POTS.
Some others cashed in on brand deals with probiotic-filled snack bars marketed under the slogan ‘Hot Girls have IBS’.
Marybeth Marshal, 27, from St. Petersburg, Florida, dropped out of college to focus on healing from fibromyalgia, and then Ehlers-Danlos syndrome.
She said: ‘You can get addicted to being sad, and sick, and the attention you receive. The “misery loves company” thing makes you sicker.
‘There might be something you’re gaining by having this diagnosis, like that it’s keeping you from a job that you hate, or from responsibilities that you don’t want to do.’