Earlier in September, UK tabloid the Daily Mail caused uproar with an article about chronically ill and disabled people. It targeted severely ill women and smeared them as somehow making their conditions up for social media influence. So, The Canary spoke to several chronically ill women about their experience. These are stories that shine a light into their lives, and their grief.
Chronic illness under attack
On 7 September, the Daily Mail ran an article called:
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
It was based around a piece published on the right-wing website Common Sense. The Daily Mail version discussed chronically ill women sharing their stories and experiences on social media. It used screengrabs of some people’s posts, but it was not sympathetic. The Daily Mail and journalist Emma James heavily implied that these women’s stories were not entirely real.
The Daily Mail and the wandering womb
The overall thrust of the Daily Mail article was either that:
a) these women were faking or exaggerating their chronic illnesses for likes on social media;
or
b) they’re part of an “internet-induced wave of mass anxiety” which is causing their symptoms.
Media and medical professionals claiming women are making up their physical illnesses, or that their physical symptoms from mental/emotional distress aren’t real, isn’t new. Yet the Daily Mail article in question was particularly unpleasant: lifting images from people’s social media, and publishing them out of context without going to them for comment.
But of course, this was the Daily Mail. So the article was littered with inaccuracies.
Inaccuracies
For example, the article stated that the women in question were:
part of a new community – called ‘Spoonies’. Thousands of teens are banding together on social media as part of the movement
But the term spoonie is not “new” – nor is the community. It was coined by writer Christine Miserandino years ago and has been widely adopted by the chronic illness community ever since.
Chronic illness: not really rare
Then, the Daily Mail claimed that some of the illnesses the women lived with were:
harder to diagnose such as polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis and postural orthostatic tachycardia syndrome (POTS).
This is not true. PCOS is diagnosed by an ultrasound and blood tests, RA by clinical examination and blood test and POTS via a multitude of simple tests. So, these conditions and others are not usually hard to diagnose.
But ask many people living with them and they’ll tell you what the real problem is: doctors invariably know little about these conditions, think they’re rare when they’re often not, and end up diagnosing people with something else. For example, doctors initially misdiagnose 83% of people living with some form of autonomic dysfunction – like POTS – with an anxiety or a panic disorder instead.
The problem isn’t the patient
The Canary spoke to chronically ill women affected by, or featured in, the Daily Mail‘s story. It’s important to note that none of the women The Canary spoke to were teenagers, contrary to the Daily Mail article. One of the women the paper featured is actually 35.
Amy, from the UK, lives with premature ovarian insufficiency (POI). She told The Canary:
I think the Daily Mail article is disgusting and offensive to those who live with a chronic illness. As a 29-year-old woman who has been diagnosed with premature ovarian Insufficiency and is going through premature menopause. I don’t just struggle daily with the physical and psychological symptoms of my condition, but I also have to fight to be heard and get the right medical care. I am regularly dismissed despite advocating and wanting the best for my health. This article supports the injustice and misogyny of the women’s health system as we are dismissed as being ‘too needy’ or ‘neurotic’.
The problem isn’t the patient! The problem lies with the medical professionals who aren’t given the appropriate training for these conditions.
But the Daily Mail‘s most damaging inaccuracies concerned the women it used social media posts from – without permission.
No-context screengrabs
The Canary spoke to Amani, 35, who the Daily Mail featured. She lives with:
- Inflammatory arthritis
- Endometriosis
- Interstitial cystitis
- Chronic migraine
- Loin pain haematuria syndrome
- Neurogenic bladder and bowel
- Costochondritis
- Traumatic brain injury
- POTS
- Post-sepsis syndrome
- Surgical menopause
- Non-epileptic seizures
The article shared an image from her social media. The Canary is choosing not to reshare it. However, Amani had written as a caption:
POV: Tell me you have chronic pain, without telling me you have chronic pain
Dealing with 10/10 pain at home alone everyday cos you know you’ll get dismissed + gaslit if you go to hospital
The Daily Mail captioned her image with:
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 [sic] lowest moments on social media in an attempt to show how they struggle
‘Writhing in pain’
This loses the entire context of the image. Amani told The Canary that the article’s caption:
was completely incorrect. It didn’t have my explanation of that moment. And I know other people that have been included in the article who were either fighting severe depression, feeling really scared or in hospital really, really sick. And the Daily Mail used an image from them – and they felt exactly the same.
The moment captured in Amani’s TikTok post was, she said:
an image of me, in bed, writhing in pain. I don’t often share those moments. So it was a big deal for me to have shared it.
But this undermining of chronically ill people was exactly what the Daily Mail article was trying to do – and it did this at the expense of some very sick people.
‘Angry and disappointed’
Josie is 32 and lives with pre-menstrual dysphoric disorder, premature ovarian insufficiency and functional neurological disorder (FND). She told The Canary that the Daily Mail article:
made me feel angry and disappointed. That a whole supportive community of people would be painted in such a derogatory way. As someone who has fought her whole life to be seen, heard and acknowledged, this just proves that society is so built on the ‘proof’ of illness being important in the way we treat others. I was truly hurt by the article and it was completely untrue.
We shouldn’t expect constant “proof” to accept people are chronically ill. Because people like Amani really are seriously unwell.
“95% of my life lying down”
Amani told The Canary:
I spend like 95% of my life lying down – and the rest of it at hospital appointments or doing the basics at home, which I can barely do anyway.
So, the privilege of living with like your health is that there are certain things in the day you don’t even think about doing – like brushing your teeth, making food, getting dressed or whatever. And for someone like me, every single tiny thing in the day is a massive effort.
And you have to prioritise. Do I get up and go to the toilet or do I get up and go and get food or do I get up and get dressed or do I make this phone call that I have to make about my health? Or do I…? It’s like a constant mathematical equation all day long, of how to spend your very limited energy.
I’m bed bound most of the time. Last year I was hospitalised on 21 occasions for long periods of time. Since 2016, I’ve spent almost every month in hospital. There’s been two periods of time where I’ve had six months out of that.
But that’s not what society often thinks.
Real-world effects
Amani said there is a huge problem with medical professionals and society disbelieving patients. She recounted an incident with the NHS which has now led to her being severely disabled – all because doctors didn’t believe she was ill:
In 2012, I prolapsed two discs in my back. I lost control of my bladder suddenly overnight and that’s a sign that you’ve got nerve damage from the prolapsed discs. So you’re supposed to go straight to A&E because it’s this condition called cauda equina syndrome – and it’s really serious; It can paralyse and leave lifelong nerve damage to the bladder and bowel.
Five times I went to A&E because I kept losing control of my bladder and I was 25. And each time they said it was anxiety, that I was just attention seeking and I just needed to go home…
Fast forward three years and suddenly I had to have a catheter. It turns out that the nerve damage that had been caused by my prolapsed discs (that they dismissed) was now neurogenic bladder and bowel. So I’ve been told I’m going have kidney failure at some point in my life. I’m going to have a colostomy bag at some point in my life – all because they didn’t do anything about it and said it was anxiety.
Amani’s story sounds horrific, but it’s not an uncommon one in the chronic illness community. Another chronically ill woman The Canary spoke to was sectioned under the Mental Health Act because doctors accused her of making her genetic, hereditary illness up. She is now bed-bound much of the time.
“I just want to give up”
Aniko is 33 and from London. She lives with endometriosis and chronic migraines. Aniko told The Canary:
The way some people see me is that I don’t live and I’m just boring – because I need rest and I know what happens if I don’t get my rest. And I am constantly exhausted, so I just want to go home and sleep. After a while, you are just invisible – to the people around you and to the system that is supposed to look after you. My day centres around making sure I take all the pills I need to take and drink all the meds I need to drink. It’s a very lonely place to be and the fact that any publication thinks it’s okay to support and approve an article like that is beyond me.
Not only is it upsetting, it makes you livid and if anyone living with a chronic condition reads it on a particularly bad day – that could be just that last straw between giving up and keeping going.
Because some days I feel that I just want to give up because what is the point?
Grieving for life
When you live with chronic illnesses, sometimes the hardest part is the grief. Amani said:
A big part of living with severe chronic illness is grieving the life that you either thought you would have, that you did have, or that you could have. There’s so much unspoken grief.
There’s a lot of shame that comes through with chronic illness because of our ableist society – and also because you want to be living the life that you want to fucking live. Through social media, my grief is a lot more processable, if that makes sense – through the solidarity that I get from connecting with other people.
It’s also more than grief. There’s often narratives within the chronic illness community about “acceptance” – sometimes pushed largely by the same people who want us to believe that some people’s illnesses were ‘all in their heads’. But Amani doesn’t wholly buy into this. She told The Canary:
I’m not at peace with my situation because it’s fucking shit. And I don’t want to accept this situation. Everyone talks about acceptance. But for me, I’m angry. I want to feel better. But now, I allow for it more and I’m more gentle with myself. I used to just give myself the hardest time and I would be silent about my chronic health issues. Ultimately, I was ashamed of them and I thought it was my fault, and I’d done something wrong.
Social media and chronic illness
Social media plays a huge role for chronically ill people. It brings them together and gives them access to the outside world. As Amani explained:
without social media, I would be so much more depressed. I would be so much more in a hole with my grief and with my shame. Writing about it online and connecting with other people in my situation – that shame is still there a bit, but oh my god, it’s so much less. And I feel like sharing your experiences with other people that are in the same position as you just helps you feel so much less alone; so much less ashamed. You are able to grieve, which enables you to then have patience and gentleness with yourself – rather than just berating yourself all the time.
Steph, 34 and from Bristol, echoed Amani’s comments. She told The Canary:
The online chronic illness community is how I found my diagnosis, it’s given me some of the best advice I’ve found to empower me in managing my health, and I’m hugely grateful to the chronic illness influencers who stick their head above the parapet to do the work they do, often unpaid or with very little financial remuneration.
Yet the Daily Mail decided to undermine not only people’s physical and mental health but also their social media – which is one of the few outlets chronically ill people have to be heard. The effects of this for Amani were devastating.
Medical PTSD
She told The Canary:
What’s not talked about enough with chronic illness is medical PTSD. So I have like severe medical PTSD because I’ve been hospitalised so much; gas-lit by medical professionals endlessly, and dismissed. And so for me and my immediate response was I just like started shaking. It was so triggering and I didn’t realise I was part of it initially, so I didn’t read it. I just was like, fuck this. And then I got tagged in a bunch of shit and I was like, oh right, okay. I felt violated because all of the images they picked are my most raw and vulnerable moments that we are choosing to share.
Amani was not the only one affected like this. The Daily Mail article’s impact was country-wide and global.
Consciously stigmatising chronic illness
Liv Loo is 32 and from San Francisco. She was diagnosed with rheumatoid arthritis aged four and uveitis aged eight – and the Daily Mail also hit her hard. She told The Canary:
First I was angry. I feel protective of all my fellow chronic illness warriors. The reality is, we are stronger together. The very thing they wrote about is actually what brings us closer together… They targeted a community already fighting to be heard due to the invisible nature of our conditions – our symptoms change daily and don’t always require assisted devices. Our pain is most often experienced in silence with a deep fear of being misunderstood or not believed at all.
It’s sad that in a world where we strive to normalise mental and physical health, they consciously chose to stigmatise it. I hope the author, editors and beyond can learn from this, take on new perspectives and be students of their own experience. May there only be growth.
‘Tiring and upsetting’
Steph said:
The Daily Mail article was tiring and upsetting… The attitude that young women are just pretending for attention is so horribly pervasive. It gives people permission to police my sickness and judge me as to whether I deserve help. I feel like I have to pretend to be some perfect sick person, which takes all the energy I don’t have. In my healthy moments and my sickest moments it even makes me question myself. There are times when I should have gone to hospital, but I didn’t because I didn’t have the energy or the willpower in those moments to navigate that performance, and I didn’t want notes on my record suggesting I was hysterical or a hypochondriac.
Chronic illness: “indescribably hard”
Amani said that if she could sum up chronic illness it would be:
indescribably hard and frequently misunderstood.
Many chronically ill people would probably agree. Steph summed it up by saying:
Being sick is a full time, excessively boring and traumatic job. And staying home all the time sucks – people should remember that from lockdown. The person who wrote that article is either a very spiteful human being who needs to work on their misogyny and ableism, or the publication is asking them to write borderline hate crime articles for anger fuelled clickbait. Either way, it stinks.
The Daily Mail chose to smear, violate and abuse chronically ill people, mainly women. It’s par for the course that people don’t believe you’re ill when you live with invisible illnesses. But an international tabloid using people’s disabilities for clickbait fodder is a massive step too far – and has caused untold damage to individuals and the wider community.
Featured image via Nenad Stojkovic – Flickr; cropped to 770×403 pixels, licensed under CC by 2.0
