Spoonies, Chronic Illness and Disability

The media – namely the Daily Mail – has been alive once again with attacks on the disabled community. This has come following a new book from JK Rowling with some focus on the “spoonie” community.

What I didn’t expect was that a book with this in it would spark the media narrative that the disabled community is filled with people allegedly competing to be seen as the worst sufferer, and is made up of mostly young women with “somatic symptoms”.

Being disabled in the UK is hard enough – I cannot speak for the experience in other countries, but I understand it is challenging wherever you are. The media narrative that disabled people, especially when you are younger (under 40) are “scroungers” has been taking place for as long as I can remember.

As a disabled person myself, who relies on the state to afford basic things such as food and shelter, I feel particularly hurt by this narrative. I’ve grown up in a household with a disabled parent and elderly grandparent. This has meant that my other parent has worked full-time as well as been a carer for both their partner and parent. When my disabilities developed, I fought the narrative. I worked myself to a mental breakdown and my mental health was never the same again. I developed OCD, but still didn’t have a diagnosis for my physical disabilities. It took nearly 10 years to be taken seriously by medical professionals about my disabilities. It took a further 3 years to get the DWP to understand and accept my needs – and I will have to go through the renewal/reapplication again in 2 years time.

So when the Daily Mail published the article titled: 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 I was fuming. Disability Twitter errupted with anger at once again being treated with such disdain.

First, let’s consider what the Spoon Theory actually is – and what makes someone a “Spoonie”, The Daily Mail simply apportioned the theory to a “blogger”, and couldn’t even be bothered to name them. But You Don’t Look Sick (2003) by Christine Miserandino is the original source. It resonated with the disabled community as a perfect way to describe to abled people what it is like living with these difficulties. I use it regularly in both my personal and professional life to explain my experiences.

The Mail’s attacks continue to suggest that “Spoonies” are “Teenage Girls”, which infantalises the spoonie (disabled) community, a common form of ableism that we are subjected to. The disabled community is made up of people from all walks of life, and a wide array of ages. You can be born with a disability, but you can also develop disabilities as you age. For example, in my case, my fibromyalgia developed following an 18 month fight with glandular fever whilst I was at university. Not being able to rest as I was studying and working meant that my body never truly recovered. We’re seeing a lot of this with people developing Long-Covid.

The article makes several assertions with little to no proof to back up their claims, such as it “encourages them to lie to doctors in order to get the diagnosis they want” and that people are competing to be the most disabled. This is based on just one person who stated they felt “jealous” of a someone who looked more “sick”.

The accusations that these social media influencers were “cashing in” are equally as insulting. As I stated above, life with a disability is hard – it can mean that you might be unable to work a ‘conventional job’ or you work less hours. Social media influencers are working, and offering deals is part of that job. It’s an income that means a person can have a roof over their head, can eat or afford their disability aids.

I’m not saying that there isn’t a problem with social media influence encouraging young people to develop things such as eating disorders and other health conditions – there is. But this kind of lazy journalism really damages the disabled community and our reality. I live with pain every day, and have had to learn how to manage my symptoms so that I can work the limited number of hours I currently do. Without supportive people in my community, including my employers, friends and family, I wouldn’t be where I am now. It’s noted that the Mail didn’t speak to a variety of people within the spoonie community – I know many with ages ranging from teenagers up to their 60s. This would have given a much more nuanced look into the community and the battles we face.

So if you are a spoonie, are disabled or living with a chronic illness or class yourself as all 3 – you are valid, your experiences are genuine. As a disabled therapist I hope to offer a space where people won’t feel judged or gaslit, but I also strive to offer this across social media and in my professional and personal circles.