CULTURE

Invisible Illness in Pop Culture: What Do Jameela Jamil and Jake Paul Have in Common?

She's a strident activist and he's a piece of YouTube trash, but they both point out how far our culture still needs to go in terms of understanding health.

Jameela Jamil

Matt Baron/BEI/Shutterstock

In true crime, there's a mythical notion of the "perfect victim" (young, beautiful, often female, with no criminal history of her own).

How closely one fits this arbitrary model is sadly correlated with how much public attention and sympathy a victim will receive. Similarly, there's a strange cultural expectation that sufferers of chronic illness need to be the "perfect sick person" (graceful, quiet, grateful) in order to be believed. Recent celebrity backlashes underscore the misconception that crippling chronic illnesses are rarer than they actually are and that they exist in isolation (in reality, many conditions come with co-morbid, or simultaneous, illnesses). From Jake Paul claiming that anxiety is all in the mind to actress Jameela Jamil being accused of having Munchausen's Syndrome, the reality of "invisible illnesses"–conditions that don't necessarily cause visible disabilities– is still wildly misunderstood and misrepresented in the media.

For years Jamil has been an outspoken activist for mental health, LGBTQIA+ inclusivity, body acceptance, and female empowerment. That's included open criticism of toxic diet culture on Instagram and Twitter and launching her movement I Weigh, a "rebellion against shame" that highlights people's accomplishments and worth beyond their physical appearance.

But in February, a writer named Tracie Morrissey took to Instagram with an extensive collection of screenshots of Jamil's interviews dating back over 10 years. She pointed out what she perceived to be discrepancies throughout Jamil's accounts of her health struggles, accusing her of purposefully lying about or causing her own illnesses for attention (Munchausen's Syndrome). Aside from being born partially deaf, Jamil's been diagnosed with Ehlers-Danlos syndrome, a genetic connective tissue disorder, and the condition can weaken various joints, organs, and whole body systems.

In response, Jamil pointed out how insidious stigmas about disabilities lead to accusations that individuals are faking their illnesses. She posted on Instagram, "I have had to fight like a f-cking dog this week against false accusations, people framing my words, and deliberately taking them out of context, trying to discredit my entire integrity, and going after disabled members of my family. And for what? To stop me from being an activist against eating disorders? To stop me from de stigmatizing conversations about mental health, suicides, sexual consent, abortions, women's rights, trans rights?"

She continued, "I've been in this business 11 years and am a smart woman. I wouldn't lie in print or on camera knowing how permanent the internet is. Especially knowing how much our media loves to portray women as liars and hysterics." She concluded, "At least we've started a huge mainstream conversation about invisible illness/chronic illness and the mockery and disbelief that comes with what is already a near impossible existence. So something good always comes of a shit storm. Big love for the messages of support and similar stories of gaslighting you've all faced. I'm so sorry. That's so painful."

Indeed, too many genetic anomalies and illnesses go unheeded by doctors, as the medical community remains uninformed about many established diseases, such as Ehlers-Danlos syndrome, which disproportionately impacts women and takes an average of 10 to 20 years to receive a proper diagnosis. In 2019, the Ehlers-Danlos Society awarded Jamil with the Patient Advocate of the Year. Upon acceptance, Jamil said, "I am sorry it took me so long to speak publicly about my condition. I think I was afraid of being discriminated against, and I think I feel, I felt, discouraged by how little information there is about it publicly, and still how little research is being done around this condition. It's terrifying how many doctors still haven't heard of it, and it's been around for a very long time. So many people have it, and so many more people than we realize as they don't know the symptoms, because the symptoms aren't being discussed en masse."

Part of this problem is, as Jamil pointed out in her Instagram post: Women are still commonly not believed, and their pain is not taken seriously within the medical community. Research consistently shows that women are prescribed less pain medication after surgery, wait longer to receive pain medication during visits to the emergency room, and are far more likely to be told that their pain is "psychosomatic" or due to emotional upset. One survey of 2,400 women found that at least 83% of respondents had experienced gender discrimination from a health care provider. Dr. Fiona Gupta, a neurologist and director of health in neurosurgery at Mount Sinai in New York City, says, "I can't tell you how many women I've seen who have gone to see numerous doctors, only to be told their issues were stress-related or all in their heads. Many of these patients were later diagnosed with serious neurological problems, like multiple sclerosis and Parkinson's disease. They knew something was wrong, but had been discounted and instructed not to trust their own intuition."

James Blake, who's dating Jamil, defended his girlfriend on Twitter: "I'm not gonna stand by and let some total strangers try to push my girlfriend over the edge to what… stop her from helping kids with eating disorders? Stop removing mainstream shame of talking about mental health?" he said, before concluding, "What are any of you even doing? And why are so many of you enjoying this? It's sick to watch, and I don't ever see men treated like this, the way we tear women limb from limb."

The dual challenges of stigma and lack of awareness are only exacerbated when it comes to invisible illnesses, which can range from heart disease, fibromyalgia, diabetes, psychiatric illness, autoimmune disorders, and even cancer. These individuals are often told they "don't look sick," which exemplifies the cultural ignorance that still exists about illness: There is no such thing as "looking sick." People with visible disabilities or who use mobility aids or other visible health care devices are not broadcasting their health condition so they can defend their diagnoses. In the same vein, people whose illnesses don't involve visible impairments aren't invalid in their struggles. Their illnesses go undetected and can be difficult to diagnose due to slow-developing or inconsistent symptoms, their similarity with other more common ailments, and, above all, a dangerous lack of cultural awareness.

For instance, Jake Paul recently invalidated every individual who's struggled with anxiety with the thoughtless (since-deleted) tweet, "Remember anxiety is created by you. Sometimes you gotta let life play out and remind yourself to be happy & that the answers will come. Chill your mind out. Go for a walk. Talk to a friend." In reality, this kind of advice not only minimizes the mental and physical damage caused by anxiety but implies that sufferers are ultimately to blame for their own symptoms. In reality, anxiety disorders affect roughly 15% - 20% of the population and not because those people fail to "remind [themselves] to be happy." The director of research and special projects at the American Psychological Association, Dr. Vaile Wright, clarified, "Anxiety is a combination of physiological and emotional responses typically to stressful things in our life or things that are going on." Specifically, during times of stress the brain releases a hormone called cortisol, among other chemicals, and elevated levels of cortisol over a period of time are proven to negatively affect memory, learning, the immune system, and the heart's ability to function. She added, "You can't avoid anxiety. You can't avoid the triggers that cause it, but you can learn how to cope with it and you can seek out the help that you really need to learn those behaviors."

As an influencer with nearly 20 million YouTube subscribers, Paul's irresponsible remark befits the online reputation of him and his brother, Logan Paul, for having thoughtless, juvenile, and exploitative online presences–with an alarmingly large audience of young people. Both brothers were criticized by mental health professionals in 2019 when YouTuber Shane Dawson created a series on Jake Paul speculating if the creator is a "sociopath," which is an outdated layman's term from pop culture that was never part of scientific criteria. Logan said, "A lot of us, me included, will do some dumb sh—, maybe some stuff that lacks empathy, strictly for views. It gets us views, which gets us subscribers. Our motivating factor is to reach the next, next, next level." He added, "Sociopath is, boiled down, someone who is just more savage than everyone else." No, it's not. Again, "sociopath" is a now-outdated informal term that only carries meaning in pop psychology–and, like all lazy language, it can have damaging consequences.

This is especially true in the age of Instagram, with chronically ill communities and activists using the platform to spread awareness. Writer Caira Conner of NBCNews commented on the discrimination and stigma inherent in accusations that Jamil had Munchausen's Syndrome. She wrote of the challenges of chronic illness from the point of view of someone who's been diagnosed with three autoimmune conditions, among other illnesses. "The sense of culpability that pervades chronic illness can be a gnawing, wicked companion to the illness itself," she wrote. She adds that she's not personally a fan of Jamil's kind of advocacy, because social media, the main medium Jamil uses to spread her message, presents a filtered version of life with a chronic illness. "The helplessness of it all isn't captured," she wrote. "It is a snapshot... deliberately self-flattering and decidedly detached from the context it pretends to highlight."

She added, "The point Jamil makes about illness—the idea that someone can be suffering and yet still be perennially met with suspicion, even outright dismissiveness—is important." Since there is, in reality, a "profound sense of loss and disappointment that accompanies a non-terminal lifelong diagnosis. There is more compassion and empathy to be elicited from viewers when they can clearly see the ravages of a particular condition, when the element of tragedy is irrefutable."

The overarching truth, in Conner's words, is our "need, as a culture, to find a third way, somewhere between the cripplingly binary options of victory or defeat, compassion or denial, cheering or cutting down" to recognize and validate all human life.

CULTURE

How Influencers Are Harming You: Kylie Jenner and Toxic Beauty Products

Criticism that Kylie Jenner's new "walnut face scrub" is unsafe only points to a symptom of the wider problem of social media influencers becoming mouthpieces for companies who don't care about consumer safety.

Kylie Jenner

(Shutterstock)

Another member of the Kardashian-Jenner clan is promoting a dangerous beauty product.

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Jameela Jamil is best known for portraying the socialite Tahani Al-Jamil on NBC's The Good Place, but she's also been making waves online for her messages of body positivity and vehement protests against diet culture. Recently, she's been coming for some of the patron saints of body-shaming: the Kardashian family.

Every day, countless Instagram influencers promote various weight-loss supplements, such as flat-tummy teas or other sponsored (and usually untested) products. But few have the power of the Kardashians, who—between Kim, Khloé, Kourtney, and the Jenner sisters—reach over 453.5 million followers, and can be paid millions per sponsored post.

Over the past few months, each one of them has posted ads for various weight loss supplements. Jamil has often criticized celebrity endorsements of similar weight-loss products, and she held nothing back in a lengthy comment on Khloé Kardashian's latest ad.

"If you're too irresponsible to: (a) own up to the fact that you have a personal trainer, nutritionist, probable chef, and a surgeon to achieve your aesthetic, rather than this laxative product...and (b) tell them the side effects of this NON-FDA approved product, that most doctors are saying aren't healthy...then I guess I have to," Jamil wrote. "It's incredibly awful that this industry bullied you until you became this fixated on your appearance. That's the media's fault. But now please don't put that back into the world and hurt other girls the way you would have been hurt. You're a smart woman. Be smarter than this."

Just a few days earlier, Jamil had left a similar message on a Kris Jenner ad for a Flat Tummy Co shake. She later posted screenshots of the since-deleted comment, which read, "Flat Tummy Co side effects are cramping, stomach pains, diarrhea, and dehydration and it can impact contraception users. Eat fruit and veg to fill up and feel good kids. It's cheaper and safer than a non-FDA approved powder over the internet."�

Image from Metro.co.uk

At first Khloé, Kris, and co. did not seem receptive to the criticism. When the New York Times asked her about Jamil's comments, Kris Jenner stated, "I don't live in that negative energy space. Ninety percent of people will be really excited about the family and the journey and who we are."

Khloé also defended her post, telling The Times that she doesn't have a personal chef and she posts all her workouts on Snapchat—which is somehow redemptive in the weird world of Kardashian logic. "Well, listen, I am showing you what to do, silly person, 15 repetitions, three times, here's the move …" she clarified.

Kim also had plenty of excuses. "If there is work that is really easy that doesn't take away from our kids, that's like a huge priority," she said. "If someone was faced with the same job opportunities, I think they would maybe consider." Of course, Kardashian West has a net worth of $350 million and previously turned down a $1 million payout for a post sponsored by a Yeezy fashion rival. (Kanye reimbursed her).

Jamil wasn't about to let the whole thing go. Following the interview's publication, she reposted some of the Kardashians' comments on her own Instagram and added, "The Kardashians need to check their moral compasses, because they appear to be broken. This was the Kardashian response to being asked by the @nytimes about my calling for transparency and responsibility in their extensive work to promote diet culture."

Later that day, she tweeted, "Essentially, 'fuck the young, impressionable people, or those struggling with eating disorders, we want the money.' I have been given these same opportunities to flog this stuff, and I don't do it, so they don't have to. Thank you, next." She added, "Their pockets are lined with the blood and diarrhea of teenage girls."

On April 2, Khloe deleted her Instagram post, prompting another tweet: "Oh look. Khloé deleted her diet shake post....There is hope after all..."

This small victory for Jamil comes after several other strongly worded takedowns of the Kardashians' glorification of diet culture. In May 2018, she criticized Kim for promoting appetite suppressing lollipops. "No. Fuck off. No," Jamil tweeted in response to the ads. "You are a terrible and toxic influence on young girls. I admire their mother's branding capabilities, she is an exploitative but innovative genius, however this family makes me feel actual despair over what women are reduced to."

She followed this with more posts and another tweet, advising Kim to "eat enough to fuel your BRAIN and work hard and be successful."

In an August 2018 interview with Channel 4 News, Jamil called the Kardashians "double agents for the patriarchy," stating that they're "selling us self-consciousness." She added, "The double agent for the patriarchy is basically just a woman who perhaps unknowingly is still putting the patriarchal narrative out into the world, is still benefiting off, profiting off and selling a patriarchal narrative to other women."

Jameela Jamil on banning airbrushing, the Kardashians and her traumatic teenswww.youtube.com

A few months later, a fan Instagram account circulated a clip of Kendall telling Kim she was worried about her weight. "Like, you're so skinny," Kendall said, to which Kim replied, "Oh my god, thank you!" The interview was widely criticized for promoting anorexia, generating backlash from celebrities including Emmy Rossum and Stephanie Beatriz.

In response, Jamil posted a quote on Instagram that read, "How much did Florence Nightingale weigh when she founded modern nursing? How much did Rosa Parks weigh when she took a seat on that bus? How much did Malala Yousafzai weigh when she started writing about the lives of girls in Pakistan living under Taliban rule. You don't know? That's the right answer. Because it doesn't matter." She accompanied the post with the caption, "Dear the Kardashians. And every girl who looks to them for a reference of how to value themselves. follow @i_weigh for a dose of reality and self esteem."

"I Weigh" is the body positivity project that Jamil has been running since February 2018. It features hundreds of posts promoting body positivity and encourages people to judge their own worth based on who they are, not what they weigh.

It all started when Jamil posted a photo of herself, captioned "i weigh: lovely relationship / great friends / I laugh every day / I love my job / I make an honest living / I'm financially independent / I speak out for women's rights / I like my bingo wings / I like myself in spite of EVERYTHING I've been taught by the media / fucking KG."

The photo went viral, and later Jamil sparked a movement by reposting it alongside a call for others to follow her lead. "I'm fucking tired of seeing women just ignore what's amazing about them and their lives and their achievements, just because they don't have a bloody thigh gap," she wrote.


But Jamil didn't always have this level of confidence. Later in the podcast in which she called the Kardashians "double agents of the patriarchy," she spoke about how she suffered from anorexia throughout her youth until a period of recovery after a car crash forced her to gain weight and reevaluate her self-perception. "I am so, so aware of the damage the media does to a vulnerable mind, it ruined the first 20 years of my life," she wrote on her blog. "In this uprising of female power, we must realize we are being set absurd extra goals, thick and fast. The further we come as a gender, the more ridiculous the ideals we have to fulfill become. We are being distracted and exhausted and our eyes are being taken off the ball. Every minute you spend thinking about how thin or gorgeous you aren't is a minute you aren't spending on growing your life."

Naturally—it comes with the territory—Jamil has received some criticism of her own, especially for her own tendency to post beautiful photos of herself online. She's also been accused of putting down other women, an all-too-common phenomenon in a society that pits women against each other.

She certainly hasn't taken her eyes off the Kardashians; in January she came for Khloé again, this time to critique a post that read, "2 things a girl wants: 1) Lose weight. 2) Eat."

"This makes me sad," wrote Jamil. "I hope my daughter grows up wanting more than this. I want more than this. Sending love to this poor woman."

But Jamil has always been an advocate for women of all shapes, sizes, and backgrounds. If you reread her posts, she's actually never denounced the Kardashians' intelligence or capabilities, instead criticizing them only for their decision to promote dangerous products and body-shaming messages. Ironically, she even defended them on an early post on "I Weigh."

Overall, Jamil has become a heroine of sorts for legions of young girls—and people of all genders and ages—who are constantly overwhelmed by damaging pressures to look a certain way. These expectations are, of course, often created by advertising companies hungry to make a profit, regardless of the consequences of their actions; and they usually pander to heterosexual, patriarchal, and white supremacist norms.

Jamil is acutely aware of her mission's radical importance. "As a woman, being proud of yourself and believing you are *enough* as you are, is an act of social and political resistance," she once posted. If that's the case, her own work—not only believing in herself but inspiring others to do the same—is a full-on revolution.







Eden Arielle Gordon is a writer and musician from New York. Follow her on Twitter @edenarielmusic.


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