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What the Media Gets Wrong — Again, and Again and Again and Again — About Chronic Illness

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A few months ago, my gastroenterologist ordered an endoscopy for me. After my IV was placed (no blown veins, let’s celebrate!) and I had been asked about my drug allergies no less than eight times, the male anesthesiologist assigned to my case introduced himself to me by saying the following: “Oh. It’s you. I read your chart earlier and there’s no way you have that rare disease you indicated. It mostly occurs in men. Who thought they could diagnose you with that?”

This anecdote will be important later. Mentally bookmark it — we’ll come back around.

But first things first, let’s cover what’s trending in the chronic illness community right now. Two inflammatory, viral articles about spoonies came out recently, “Hurts So Good” published on September 6 by Common Sense News and “Addicted to Being Sad” published on September 7 by the British tabloid Daily Mail. Both come to a similar conclusion: Social media platforms, particularly Instagram and TikTok, are perpetuating the “victimhood” upheld by young, female spoonies. More bluntly said, chronic illness patients appear to be faking it for the camera and are addicted to the likes.

I first heard about the articles via Bev, a health care and disability advocate who lives with endometriosis and adenomyosis. She explained to me her views, particularly the damage these harmful pieces can and likely will cause for people living with chronic illness. “They are perpetuating ableist ideas that prevent people with chronic illness, and especially undiagnosed chronic illness, from getting the care they need. These attitudes affect how much social support someone with chronic illness receives from their community. These attitudes create a lot of shame, leading to further isolation.

“People [can] die as a result of these attitudes.”

Here are four additional takeaways from where I sit:

1. The articles are focused on the wrong narrative.

Terminology of the spoon theory aside (for anyone who doesn’t like it, here are 16 alternatives), the question we should really be asking is: Why do chronic illness patients seek digital outlets for their vulnerable health stories in the first place? Have their struggles been invalidated more than they’ve been affirmed “in real life”?

2. The comment sections of both stories tell you everything you need to know.

On Common Sense, the reader comments are flippant, ableist, and so detrimental to patients like me. They range in scope from the harm of social media on young minds, to the legitimacy of gender dysphoria, to multiple mentions of multiple sclerosis being “cured” by the carnivore diet. On the Daily Mail, the comments have been turned off entirely. Where is the commentary on the harm done to the chronically ill by misinformed, nondisabled folk? What role do unrealistic social expectations and stigma play on a patient’s self-worth and identity?

3. It is not our place to judge how another person copes with their diagnoses.

One very clear throughline in the articles is about how people with chronic illness make up a “community of grievance” that leads to the adoption of “victim mentalities.” This very idea that we can so openly judge how another person struggles is dangerous. How migraine affects one person’s quality of life can be drastically different than someone else, and neither are wrong. There are too many individual factors at play that influence the burden of disease on a single person — access to equitable care, socioeconomic status and income, education, food security, quality of health insurance, identity, access to shelter as well as transportation, and general depth of a patient’s in-person support system.

4. It’s so harmful to use one corner of the internet as gospel for an entire population.

This duo of articles offered very little diversity within their commentary. The writers feed into stereotypes and analyze a very large population through a narrow gaze of young, female, and predominantly white. The chronic illness community at-large is much bigger, and it’s unfair to make sweeping conclusions off of a very small sample size.

Ah, this has been fun hasn’t it?

Now let’s circle back to the personal anecdote I shared at the beginning of this article. Medical professionals like that anesthesiologist are one of the reasons that patients turn to the internet. Without even asking me about my medical history, I was put on blast for being a woman with a historically male-dominant rare disease, and flat out told I didn’t have it without any kind of physical examination or knowledge of my lived experience. What message does this send? If these recent commentaries should care about any kind of injustice in the chronic illness community, it should be this.

I can’t sit here and say, with definitive certainty, that there isn’t a person or two out there who could be weaponizing health as some sort of social currency. Perhaps there is. But what I do know is how I felt when I read those articles — dismissed, angry, judged, broken, disappointed, and deeply sad.

So to anyone who feels similarly, here’s my final battle cry to you: Your pain is valid. How you live with and manage that pain is your own decision. What and how you share your experiences online is for you to determine. Joy, rage, depression, and doubt can exist within the same person. None of us owe anyone — especially on the internet — the full picture of our health.

Getty image by Klaus Vedfelt

Originally published: September 13, 2022
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