Community Spirit Health & Wellbeing

The Online Spoonie Community is Valid and Important

September 13, 2022
A white woman with dark hair is resting in bed wearing headphones and looking at her phone.

The past couple of weeks have seen several high profile attacks against the online Spoonie Community, and so I decided it was time to write a post about its importance and validity. For those of you who don’t know what a Spoonie is, it’s a term that a lot of chronically ill and disabled people use as a way of identifying themselves and finding others like them. It comes from The Spoon Theory, which uses the visual aid of a handful of spoons to denote the energy that someone has. Spoonies often talk about running out of spoons, to describe how they have no energy left.

Other people prefer to use a faulty battery as something those who aren’t ill may better understand – if your battery never charges to full power, or loses power quickly, you won’t be as able to do things in the same way as those with a battery that fully charges or retains power for longer. But even those who use this analogy still recognise the term Spoonie, and it’s a way of connecting with others online who understand you.

The Importance of the online Spoonie Community

For most people, becoming chronically ill is an incredibly challenging time. As is living with a chronic illness. I mean it’s in the name – it’s chronic, and it never ends. But unlike with acute illnesses where the doctors run tests to figure out what’s wrong, and then offer treatment so that you can return back to your normal baseline level, those with chronic illnesses are often left with no answers and zero support.

When all the usual tests come back “normal”, which they very often do with a lot of chronic illnesses, patients are left to deal with their symptoms alone. Doctors shrug their shoulders and say they don’t know what’s wrong, offer diagnoses with no treatment options, or suggest it is psychological rather than physical. The story of patients waiting years for an accurate diagnosis, being constantly brushed off or gaslit by doctors, is incredibly common.

And this is why the online Spoonie Community is so very important. It allows patients to find others like them, who understand what they are going through and can offer support. Support can come in the form of simply listening and empathising with you, or it can be providing information and help so that you can better advocate for yourself and finally get a diagnosis and/or treatment.

So many chronically ill patients become experts in their conditions, having read countless research papers and articles, thanks to the Spoonie Community sharing resources with each other. And the importance of this must never be underestimated! Many doctors hate it when patients turn up knowing more about their condition than they do, and yet we never expect all doctors to know everything. We simply want doctors to recognise we may have done our research and might actually know our bodies better than they do, and refer us onto specialists who can help.

The Attacks against the Spoonie Community

Given how much the Spoonie Community helps people access the care they need, you’d think people would be supportive of it. Especially when we’re living through a mass disabling event (the pandemic) in which people are being diagnosed with Long Covid in staggering numbers. There are many people who have been living with post viral illnesses like ME/CFS and Fibromyalgia for years, sometimes decades, who have helped those newly diagnosed with Long Covid both access help and avoid harmful treatments such as Graded Exercise Therapy. New patients would never have been able to access this kind of support without the online Spoonie Community, which is often found on social media sites like Twitter, Facebook, and Instagram.

And yet three times within the past couple of weeks the Spoonie Community has been attacked in high profile cases, in attempts to delegitimise patients. It is painful to see this happening, as someone who has fought long and hard over many years, and I want to recommend caution if you are reading this and suffer from chronic illness yourself. I couldn’t write this post in response to them without acknowledging them, however please skip this next part if needs be. And if you do choose to read it, please do so when you know you have the energy to deal with the emotions it will trigger. However if you aren’t chronically ill, please read the following, as you need to know what we’re up against!

Ableism in The Ink Black Heart

First off there was the publication of JK Rowling’s latest book under the pen name Robert Galbraith. We’re going to skip over the transphobic issues related to this for the purpose of this post, just because I need it to focus on the ableism within it. But please know that as the wife of a transgender woman, I am well aware of them. So let’s take a look at what JK Rowling has to say about the Spoonie Community in her latest book, The Ink Black Heart.

I have to preface this by saying I have not read the book. However I have seen multiple screenshots and analyses online from people who have read the book, and it makes for awful reading. And this isn’t even a comment on the writing itself, which is incredibly poor, but rather on the subject matter. Within The Ink Black Heart, a famous YouTuber is first accused of racism, ableism, and transphobia, and then stabbed. And within the ridiculous number of fake Tweets that are included in the text, not only are those who use the spoon theory and fight against ableism online misrepresented, they’re even seen as aggressive.

Screenshot of The Ink Black Heart found here
Screenshot of The Ink Black Heart found here

Note in this latter screenshot how JK Rowling couldn’t even get the details of chronic illnesses correct – I assume CF stands for Chronic Fatigue, and I’ve never seen anybody list that in their profile. Chronic fatigue is a symptom of many chronic illnesses, but Chronic Fatigue Syndrome is the term a lot of doctors have given to patients with ME/CFS. And as for POTs… this stands for Postural Tachycardia Syndrome and should be written as PoTS. The fact that JK Rowling has removed the word syndrome from CFS and minimised it in PoTS should be of concern. Because this is exactly the same kind of gaslighting people within the Spoonie Community experience all the time.

As for making chronically ill people aggressive and wishing harm to others? Have you met the people who make up the Spoonie Community? They spend so much of their limited energy trying desperately hard to help people avoid ending up like them (as in the case of people with post viral illnesses warning people to do everything they can to avoid catching Covid) and helping those who are ill to access the care they need. They aren’t going around threatening people!

Medical gaslighting in articles about chronic illness

The second attack on the Spoonie Community came a week after the first, when Suzy Weiss published an article entitled Hurts So Good. I want to repeat the warning that I already gave and suggest you click through to that link with caution if you are chronically ill yourself – it will make you angry! The article’s main aim seems to be to completely discredit all chronic illnesses that cannot yet be easily explained with a test as psychological in nature, and that Spoonies thrive off the attention they get online for being “special”. And in order to give credence to this claim, the author has sought out several doctors who are more than willing to back this.

Here are just a few quotes from the article, to show you what I mean:

Dr. Sullivan, the UW psychiatrist, hadn’t heard of spoonies. None of the experts I spoke to had. But he worried that the internet had unleashed “communities of grievance” that led patients to adopt “victim mentalities.” He told me, “The idea is: ‘You have to accept the fact that I’m disabled even if you can’t see it, because that doesn’t invalidate my experience of disability.’”

[…] the cultural critic Freddie deBoer has put it this way: “What I would love to achieve is a society where people don’t feel like they have to medicalize their pain in order for it to be taken seriously as pain.” He adds, “You don’t have to tell me that you have fibromyalgia. You can just be tired, and I can have sympathy for you as a tired person.” 

Another reason for spoonies’ failure to improve may be “secondary gain,” Assaf said. “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.” 

As you can clearly see from these three quotes, the author has found doctors who are more than happy to look upon very physical conditions as being psychological in nature. But what this fails to mention is that many conditions that we now accept as physiological in nature were once considered psychological too, because they hadn’t yet discovered the right tests to show what was going on in the body.

We see the exact same thing happening with post viral illnesses, where for decades conditions like ME/CFS and Fibromyalgia have been considered psychological because all the regular tests come back normal, and yet because of the vast numbers of people getting sick with Long Covid there is more research into post viral illness and they are starting to find clear physical evidence, such as microclots, connective tissue disorders, and mitochondrial dysfunction.

It’s not even just a case of the standard tests coming back within the normal range – many of us haven’t even been offered standard tests. Just take for instance how I have suffered from chronic migraine that has been resistant to all medication since I fell ill with a post viral illness 7 years ago, but have never once been offered an MRI to see if there is anything showing up in the brain. People with chronic illnesses are often brushed aside without even looking at what may be the cause.

Which is why, when the author of Hurts So Good includes the following information, you have to realise what is actually happening:

[…] a woman with over 30,000 followers offers advice on how to lie to your doctor. “If you have learned to eat salt and follow internet instructions and buy compression socks and squeeze your thighs before you stand up to not faint…and you would faint without those things, go into that appointment and tell them you faint.” Translation: You know your body best. And if twisting the facts (like saying you faint when you don’t) will get you what you want (a diagnosis, meds), then go for it. 

The patients aren’t lying to their doctors, they know they are likely to be dismissed because of the nature of their condition, and so telling the doctor they can function with adaptions means they will never get a diagnosis. And that’s before we even consider that requiring such adaptions proves there is something happening in the body, because healthy people don’t have to wear compression socks and squeeze their thighs upon standing to avoid fainting!

And as if one article like this wasn’t enough, the The Daily Mail took up the cause too. Because of course it did. What’s better for a newspaper like that than an article depicting young girls as being addicted to the attention they get for being sick?

Medical misogyny

You may have noticed that within these articles the main focus has been females, and young females at that. And there is a very real reason for this – medical misogyny. Historically any illness that has affected only females, or disproportionately affects females, has been underfunded and poorly researched. Take, for instance, ME/CFS, which disproportionately affects females. In a report made by the ME Association in 2016 they found that whilst the number of people in the UK with ME/CFS was estimated to be around 250,000 compared to 100,000 patients with Multiple Sclerosis, MS had received 20 times the funding that ME/CFS had. 

Lack of funding and research means that we continue to have no recognised tests or suitable treatment for these kinds of conditions. And presenting to the doctor as a female with a condition that is poorly understood within the medical community almost always leads to the suggestion that it is psychological in nature. Or that it’s “just one of those things” as often happens when females turn up to the doctor complaining of period troubles, spending years with no support until they are finally diagnosed with something like Endometriosis or PCOS.

And young people are even less likely to be taken seriously. I know that from experience, having been kicked out of a gynaecologist’s room in tears at the age of 19 having been told I was “young and healthy, so there couldn’t possibly be anything wrong with me.” Two years later, I was told I was “lucky to be diagnosed so young” with Endometriosis following the surgery I fought for, having already spent eight years in agony. So it is no wonder to me that these articles have decided to attack teenage girls in particular. Because of course they’re simply hysterical. There couldn’t possibly be anything really wrong with them, could there?

And it’s not just illnesses that disproportionately affect females that lead to poor outcomes when visiting the doctor. As Sarah from Arthurwears told me:

In the last 2 years my husband and I have been to see the GP for exactly the same issue (continuous cough and tight chest that lasted months) – GP sent me on my way with an inhaler ‘just in case’ yet booked my husband in for a chest x ray at the hospital 

The difference in the way that males and females are treated by doctors is shocking, and articles like these only add to the stigma that seems to follow females when it comes to trying to access medical care. And yet, when it comes to chronic illnesses, it must be made clear that males experience chronic illnesses too and are included in the Spoonie Community. I do not want to make it sound like this is a female only issue. I’m just highlighting why these two articles have specifically gone after young teenage girls.

Experiences within The Spoonie Community

I want to end this post with some stories from those within the Spoonie Community, that share the experiences of other people. Because it is important that this isn’t just my own voice speaking. The Ink Black Heart, Hurts So Good, and the Daily Mail piece are all written by those outside of the community, highlighting the voices of those that agree with the rhetoric they wish to advance. So here are the other voices from within the community, that show just how important the Spoonie Community is and why we so desperately need it.

The online community has been wonderful for me personally. I’ve gotten lots of advice & help from others who are in the same situations as me. For example, disability twitter has helped me through several diagnostic tests and have helped me find out what’s the matter.

Jade is 20, lives in Scotland, and has Ehlers Danlos Syndrome, PoTS, Eczema/Dermatitis, Asthma, and Graves’ Disease

The twitter community helped me realise that my NHS clinic was treating me for deconditioning, not ME/CFS. Their information about the illness differed wildly from my experience, and I declined significantly under their supervision. I had previously been undiagnosed for 8 years.

Helen is 35, lives in Northumberland, and has ME/CFS and PoTS

I was pushed away multiple times by GPs who put my chronic pain down to stress. Whilst they may have been right that stress was the trigger, I was offered no support other than advice to exercise, eat better, and sleep well (something which proved impossible due to pain in the night). Eventually, after 13 years, I finally got a diagnosis of fibromyalgia, and another of gallstones. I was told they’d missed it because I didn’t fit the stereotype (fat, fair and 40 – a consultant actually told me this). It was a hypnotherapist I’d paid to see out of desperation who told me my skin tone suggested gallstones to her, and I had to push for a scan.

Because I was young, slim and white every doctor I saw basically assumed I was neurotic. Ironically, after so many years of being ignored, I did become incredibly anxious about my health. It’s taken years of counselling to pick everything apart and put it back together again for me to finally learn how to live with the pain. I’ve spent thousands on alternative therapies trying to get to the bottom of my “all in my head” symptoms, when being taken seriously at the start would have prevented my fibromyalgia from spiralling. I’ve had 25 years of debilitating pain and subsequent anxiety; my 30s were basically ruined by health issues that didn’t need to be as bad as they were.

Helen is 56 and lives in St Albans

Everytime I see a doctor I am gaslit. When I had appendicitis they told me it was just stress. The same night I was rushed in for an emergency appendectomy. When I had gall stones it took 12 months, multiple trips, and 2 hospitals to get listened to. When I finally had someone listen to me he asked why I didn’t take pain killers – “because if you don’t see how much pain I’m in you’ll never take me seriously.” They told me it was indigestion first, then it was a musculoskeletal strain. Etc.. Then when a doctor finally listened I was booked in for surgery the following day. And when my pain relief wasn’t working a doctor still decided to complete the small procedure for my ingrown toenail.

When I knew I had something wrong, it was just part of my depression. It wasn’t, it was CFS/ME. When I said I didn’t want ‘rehabilitation therapy’ for my CFS I was told it was my only option. When I wanted counselling for my severe depression I was told I had to attend a group session for 8 weeks and after that I’d get help…. Then they had the gall to say I don’t need counselling but they’d offer me more group sessions.

I feel like we have to fight for every little thing in life. Fight for our health and wellbeing. If the online community can help to support people who are like me then that is something we as a whole should be supporting. I for one check out chronic illness humour daily because if I can’t laugh, I’ll cry. Life’s hard enough, don’t make others doubt themselves over their own health. We, or at least, I have enough imposter syndrome to do that myself. Take your cruelty elsewhere.

Kayleigh lives in Lincolnshire

None of us want to be this sick. None of us want to experience the chronic pain, fatigue, or the many myriad of other symptoms that come with our chronic illnesses. And the only attention we’re asking for is the recognition of our very real symptoms and better support, both medically and societally. Ableism is a huge issue in our society, and articles like those I have talked about simply damage us further.

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