Addicted to Being Us: Finding Support from a Loving Community

Chelsea writes a response to a recent article published by the Daily Mail accusing young girls and women of being addicted to being sad and posting content to generate likes and money. In reality, they are doing it to spread awareness for the community and find support from understanding and loving people.


Dear Daily Mail,


Re. Addicted to being sad: Teenage girls with invisible illnesses – known as ‘Spoonies’ – post TikToks of themselves crying or in hospital to generate thousands of likes – as experts raise concerns over internet-induced wave of mass anxiety. Published 7th September 2022 by Emma James.


When I read your recent article about teenage girls who have invisible illnesses being “addicted to being sad”, I was compelled to respond. I felt extremely disappointed a news outlet would create something so biased and sensationalist. Your writing came from a position of ignorance on the subject of chronic and invisible illnesses and appears to be actively promoting negative and unsubstantiated views. I would like to explain why your words can be so damaging.


“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’”


Language is powerful. It is not only words that matter, but also the way you say and present them. Placing invisible illnesses in scare quotes implies lack of credibility or authenticity, as writers for the Daily Mail know well. Invisible illnesses (also known as hidden disabilities) are disabilities not visible to the naked eye, though they still impair normal activities of daily living. However, they are just as valid as conditions where the disability is apparent, such as those living with mobility aids.


Spoonies is a term used to describe those who identify with the spoon theory, coined by Christine Miserandino, an individual with lupus who created this metaphor to explain to her friend how her energy levels worked. It explains how our energy levels work to people who do not live with chronic illness. In simple terms, everyone has a number of spoons which represent how much energy we have to spend in a day. Each spoon is taken away after a task is completed, e.g. showering, eating, going for a walk. Those living with chronic illnesses naturally have fewer spoons (or energy) than most people, meaning they will be spoon-less (or energy-less) faster.


These videos, aimed at raising awareness through sharing people’s lived experience, generate thousands of likes as a way of the community showing support. A community of like-minded people in similar situations that have insight into what it’s really like to live with invisible illnesses. The community relates to these videos as they mirror its own lived experiences and show that we are not alone.


“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’.”

Trust me when I say nobody wants a chronic illness. We may have to push and showcase how severe our symptoms are for the reason that doctors do not always believe us.

On TV shows or movies, healthcare professionals are quick to the scene. They do all the necessary tests and characters often get a diagnosis within the next few days. They are then given the right treatment, which quickly allows them to escape their state of limbo in which they didn’t know what their condition was or what to do about it. That is not our reality.

On average it takes a staggering four to five years for someone with a rare disease to receive an accurate diagnosis, and they will consult with five doctors and receive three misdiagnoses. Even on diagnosis, 95% will still have no effective or known treatment.

I can see no evidence within your article to support the claim that there is a trend for young people to be lying to doctors, or encouraged to do so, seeking a fake diagnosis. This article lacks any data to substantiate this claim.

Rather, when I watch these types of videos you highlight, I see young women crying because they feel sadness, are confused, and are grieving the life they once had. Much like other high-profile advocates who choose to share their cancer stories, for example, they are aiming to highlight their challenges to raise much-needed awareness about the often-unseen trauma related to living with chronic and invisible illnesses.

“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.”


Again, putting the word strategic in scare quote implies an undertone, further propagated by the quote:


“‘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,’ said Dr. Paulina Assaf, a psychotherapist at the Pain Reprocessing Therapy Center in Beverly Hills.”


In reality, being strategic is about prioritising daily activities and responsibilities to enable a quality of life and the self-care required to live with a chronic illness.


“Many of the women complain about being ignored or misdiagnosed by doctors… share their rawest moments to give an ‘insight’ into what life is like with their rare diseases.”


“Complain”… I should say they do!


Did you know that when someone is misdiagnosed, not only does it delay access to the correct care and treatment pathway, but they could be prescribed the wrong medication, which could make their symptoms significantly worse and, in some cases, prove to be life threatening? As identified in recent reports, the impact of chronic and rare diseases on mental health is significant, and a lack of specialists, research, funding and awareness makes finding the right treatment complex, exhausting, expensive and a postcode lottery.


Sadly, the article is biased against girls and women in its negative portrayal of the female experience of living with chronic health conditions. There is already a well-documented gender bias when it comes to healthcare, and this type of narrative only perpetuates this.


It is known that some people purposefully take their spouse (who is male), a father or male companion so they are more likely to be believed in a doctor’s appointment. So, yes, women may have to “complain” more to be taken seriously. Who else is going to fight for us?


People with invisible illnesses share their insights to help spread awareness and advocate against exactly this kind of gaslighting and bias. Sharing health stories provides an incredibly powerful view of lived experience, and one that cannot come from textbooks. These real-world insights raise vital awareness, which in turn can help shorten diagnosis times.

“Others claim that they are suffering from ‘medical gaslighting’, which includes being told by your doctor to lose weight to help your condition.”


Medical gaslighting is a term which describes when people, particularly medical professionals, use psychological factors to explain a patient’s symptom, sometime at the cost of treating the physical systems. Regardless of intent, this can affect an individual’s confidence and leave them feeling confused and ignored, having to search for validation of their experience.


Rare and chronic diseases affect 1 in 17 of the UK population, and while some are genetic, many can affect any of us regardless of age or stage of life. The so-called “communities of grievance” referred to in the article are in fact crucial peer-support networks for people with chronic illnesses.


The rare and chronic disease community is a beautiful space. It provides a road to acceptance, understanding and ways to adapt. Participating in this community is not about adopting a victim mentality: people with chronic illnesses are certainly disadvantaged through disability—visible or invisible—but going through something that traumatic does not create a victim mentality: it creates a strong one, especially with the help of the community.


Living with chronic health conditions can be extremely lonely as people within the wider community do not always understand the issues we face, and articles like further isolate people, particularly young people, from their peers.

The “hundreds of thousands of people, mostly teenagers and women” have found peace, love and support in their communities. This support you put in scare quotes is a real thing to the 3.5 million people in the UK living with rare and chronic diseases.


I have met wonderful people in this community. We advocate for what we believe in, spread awareness and fight for our rights. We speak up against people or organisations who target and sensationalise people with disabilities and whose narrative seeks to undermine their unique health experiences.


We do not want pity, for people to feel sorry for us. If we had a choice, we would not want to be looked after, have financial difficulties or give up the things we love or lived for. We are not “addicted to being sad”, quite the opposite—we are addicted to the loving community we have found that is supportive, relatable, understanding. With people that are empathetic towards each other and show kindness when others may not.


We would ask that you took the time to really engage with these stories and individuals in the chronic health community. With your reach you could be a powerful and positive force for reframing outdated and negative narratives and help elevate the voices of this community.


You never know, you might learn a thing or two from these stories, you could even be inspired. You might even consider whether this article should be removed altogether as 200 people have asked that you do.


Yours,


Chelsea Wong


 

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