Invisible Illness
I’m angry. No - I’m fuming.
The Daily Mail recently published an article by Emma James called Addicted to Being Sad that was absolutely atrocious to read. It’s fully-fledged, no holds barred, vicious attack on the disabled, chronically ill, and invisible illness community. James particularly focused on teenage girls, and women in general, doubling down on both systemic sexism and ableism in the medical industry. Her tagline reads “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 could dissect this alone and have paragraphs to say but instead of giving her words too much power - I’m going to get straight to the facts.
Firstly, we are talking about people’s lives. These are real people who are living with debilitating illnesses, and once James has published her piece and closed her laptop, she can go on with her life as usual. These girls and women, however, still have to live with the realities of their disabilities, as well as the repercussions of what articles like this have on the way society and the medical industry treat them. James is misquoting them too - ascribing quotes to real people of things that they’ve never said. Marybeth Marshal is one of them, and she’s spoken out against the Daily Mail.
Essentially, James has denied that these illnesses are real or, when acknowledging their reality, infers that the symptoms and experiences are exaggerated for views and likes. She’s reduced very real suffering to mass hysteria. Women have been accused of hysteria for centuries. In fact, the term actually comes from the ancient Greek word for uterus. Plato believed that when women couldn’t conceive, their uterus would move around their body and cause physical and neurological symptoms - diagnosed as hysteria. The idea of female hysteria has been altered and repeated by multiple scholars over the centuries - from French neurologist Jean-Martin Charco, to Freud, and now, apparently, to Emma James from the Daily Mail.
But these women are not hysterical - they are suffering from invisible and chronic illnesses. According to the University of Massachusetts and Disabled World, over 10% of people in the USA have invisible illnesses and over 90% of chronic illnesses are invisible. The reality for those 10% is that they are continually undermined, ignored, and not taken seriously by the medical industry. Why? Because doctors view disability and chronic illness through the lens of the Medical Model. The Medical Model views disability as a problem that needs to be fixed - and therefore sees the disabled person as someone who is inherently broken. Doctors often don’t see the patient - they see the “problem” and when the problem doesn’t line up with what they can understand, then they dismiss the patient instead of actually doing what they can to help. Of course, there are excellent doctors out there, but this is sadly the overarching, lived experience for people with disabilities and invisible, chronic illnesses.
The Medical Model lens is one of the reasons that invisible and chronic illnesses take an average of four years to even diagnose - let alone effectively treat. Patricia Fennel, an expert in chronic and invisible illnesses, calls this process the “Sea of Ambiguity”. The imagery of being lost at sea, alone, with little direction or hope, is a striking one for people who are battling with invisible illnesses. A study in the Journal of Health Science and Education called Suicide is a Concern for the Chronic Invisible Illness Community published statistics show the stark and terrifying reality of how this community are being disatrously let down. For people who have Chronic Fatigue Syndrome, an illness maligned by The Daily Mail, sucide is the second leading cause of death. 50% of people with Postural Orthostatic Tachycardia Syndrome (POTS), another illness that James brushes off, are at high risk of suicide. And that’s just the start of it.
The people who suffer from these illnesses are finding community, encouragement, and understanding on social media. These “spoonies” - a term that James continually misuses and abuses - are no longer floating alone at sea - instead they are building a life raft and travesting difficult and usually isolating circumstances together. James taking community and turning it into something ugly and self-congratulatory is disgusting and, quite frankly, dangerous.
I’ve spent the past 5 years of my life in debilitating pain. I personally suffer from two invisible illnesses - Endometriosis and a Traumatic Brain Injury. These diseases have affected everything in my life - my career, my marriage, my friendships, and my mental health. It wasn’t until 2 weeks ago after an emergency surgery that we knew how bad my disease was - some of my organs are permanently damaged and the reality is that it’s not a question of if my disease will grow back, but when. There are 2 main reasons why invisible illnesses, like Endometriosis, take so long to be recognized, diagnosed, and treated:
Difficult to diagnose: I cannot tell you how many times I have been to the emergency room with debilitating pain, only to be told that there was nothing wrong with me and sent home. If you live in the States, or any country that has turned Health Care into a money-making machine, then you know how expensive trips to the ER are. To be sent home, after paying wild amounts of money, and to still have no answers as to why you’re in agony is one of the most difficult and most isolating things that I have ever experienced. Currently, we don’t have enough information on Endometriosis to diagnose it properly without surgery. Surgery as a diagnostic tool is extreme - it's invasive, traumatic, and expensive. Because of these limitations, it can take between 7 and 10 years to be diagnosed.
It’s expensive: Health Insurance in the USA is so expensive that medical bills can often bankrupt families. The average family of four pays $21,432 in health premiums annually. You might be thinking: “isn’t this usually covered by your employer?” Sure. But what happens when you’re too sick to work? You lose your insurance, your income, AND your ability to get medical care. I have permanent damage to my body because of how long it took for me to get surgery. Why did it take so long? Because we had to wait until I was on my husband’s insurance. The system is broken.
At the end of the day, the Daily Mail isn’t exactly known for journalistic integrity, so why is it so infuriating that Emma James discredited the necessary activism and movement that these “attention seeking spoonies” have created?
Because despite her lack of professionalism and research, she is still given a platform that reaches over 6.6 million people.
We know the impact of media on people’s perceptions and biases. Articles like this from journalists like Emma James and The Daily Mail are dangerous. I’m sure that James - or whoever assigned her this article - didn’t wake up one day and decide “You know what I feel like doing? I feel like writing a dangerous article that will lead to the public not taking the lived experiences of disabled people seriously. I hope it leads to growth of ableism within the medical industry and increases isolation of disabled people which will exacerbate their rates of depression, PTSD, and suicide.” But the reality is that because of her implicit, and explicit, biases - she did just that. One thing I talk about often is the idea of funnels of oppression - and it’s something that James has played right into with this article.
They start as a simple, but negative, implicit bias that goes unchecked. Then those individuals with unchecked biases create systems within society, and because they are not including disabled people within them, the systems themselves are not inclusive. Systems, by nature, are built to impact more people, so the non inclusive systems these people create then go on to reinforce negative implicit bias and the cycle grows and grows.
What does this look like in practice? Let’s say someone reads this article and they happen to be a manager. Their implicit bias is informed by this article rather than the lived experiences of disabled people. This manager’s direct report has an invisible illness and needs accommodations. That manager will now view their accommodations as unnecessary or seeking attention. They refuse their accommodations. The employee cannot accomplish their job any longer because of a lack of accessibility. The employee loses their job along with their health insurance. Moving forward, that same manager refuses to hire or accommodate disabled workers because of this article. The remaining team sees this and is scared to request accommodations for themselves, or other direct reports. With every iteration, the ableism grows.
I didn’t create my Simplified Inclusion Training because I was bored and had nothing better to do. I created it from my bed, horizontal, with a heating pad and tears streaming down my face because my pain was excruciating and the only thing that brought me even a sliver of solace was the hope that someday those in the media, marketing, and entertainment industries might take the lived experiences of disabled people seriously.
If you lead a team - especially if they are responsible for communicating to large audiences - you need to make sure that your content doesn’t fall into this trap. Our lives and progress depend on it.
So how can you help? Here’s 3 quick ways:
Retweet this article and tag The Daily Mail and Emma James to ask them to remove this heinous article.
Talk to whoever is in charge of HR, career development or media/marketing initiatives at your place of work to address implicit bias and prevent these ideas from being perpetuated.
Commit to learning about ableism - follow along to my advocacy and that of other disabled people.