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.

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 Feature

Drew Brees Exemplifies How NOT to Be a White Ally

The quarterback said "I will never agree with anybody disrespecting the flag of the United States of America or our country." And then he tried to apologize. And only made it worse.

Drew Brees, a man who makes literally millions of dollars for throwing a ball, has come under fire for insensitive comments he made about NFL players kneeling during the National Anthem to protest police brutality.

"I will never agree with anybody disrespecting the flag of the United States of America or our country," Brees said in the interview with Yahoo Finance. He clarified that this was in part because he envisioned his grandfathers, who fought in World War II, during the National Anthem. He continued, saying, "And is everything right with our country right now? No. It's not. We still have a long way to go. But I think what you do by standing there and showing respect to the flag with your hand over your heart, is it shows unity. It shows that we are all in this together. We can all do better. And that we are all part of the solution."

This isn't the first time Brees made it clear that he cares more for the idea of a make-believe unified America than he does for actual human lives. In 2016, he criticized Colin Kaepernick for kneeling during the anthem, saying it was "disrespectful to the American flag" and "an oxymoron" because the flag gave critics the right to speak out in the first place.


Colin Kaepernick Kneeling Colin Kaepernick kneeling in protest of racist police brutality


Of course, the flag's alleged ideals have been proven to only be applicable to wealthy, white men—men like Brees. Sure, his grandfathers did a noble thing when they fought under the US flag during WWII, and no one, including Kaepernick, has ever said that sacrifice isn't worth respecting. Thanks to the sacrifices of many people (including the enslaved Black backs upon which this country was built, including the scores of routinely abused Black soldiers who fought for American lives), America has offered opportunity and peace for many, many people. In particular, Ole' Glory has been very kind to men like Brees: rich, white men who still control the majority of the power and the wealth in the United States.

But what about the rest of us, Drew? What about George Floyd whose neck was crushed by a police officer who kneeled on him so casually that he didn't even take his hand out of his pocket? What about Ahmaud Arbery, who was shot for the crime of being Black and going for a jog? What about Breonna Taylor, a black woman who was murdered by police in her home in the middle of the night for a crime that had nothing to do with her? What about Tony McDade, Drew–have you heard his name? Have you heard about the 38-year-old Black trans man who was gunned down in Florida last week? Do you understand why these people's family's may harbor just a bit of disrespect for your precious flag?

Is it possible for you to realize, Drew, that your wish for "unity" is not a wish for progress, but a wish to maintain the status quo? When you call for unity under the American flag, you're talking about your flag, the flag that represents a long, sordid history of racial oppression and violence. There is no unity where there is no justice. When you say that "we are all in this together," what you're saying is that we all have roles to play in the version of society that has served you so well. For your part, you'll be a rich, white man, and for Black people's part, they'll continue to be victims of state-sanctioned murders– but hopefully more quietly, hopefully in a manner that doesn't make you uncomfortable?

When you say, "We can all do better. And that we are all part of the solution," what you mean to say is that POC and their allies are at fault. Sure, you probably agree that Derek Chauvin took it a bit too far, and you probably feel a little self-conscious that he's brought all this "Black rights" stuff up again. But when you say "all," you place blame on the victims who are dying under a broken system. And what, exactly, do you expect POC to do differently, Drew? Ahmaud Arbery was just out jogging, and still he died. George Floyd was just trying to pay a cashier, and still he died. POC and their allies try to peacefully protest by marching in the streets or taking a knee at a football game, and still white people condemn and criticize. Still the police shoot.

After much criticism, Brees did attempt an apology on Instagram, where he posted a hilariously corny stock photo of a Black and white hand clasped together. His caption, though possibly well-intentioned, made it even clearer that his understanding of the movement for Black lives is thoroughly lacking.


Highlights of the "apology" include his immediate attempt to exonerate himself from culpability, claiming that his words were misconstrued, saying of his previous statement: "Those words have become divisive and hurtful and have misled people into believing that somehow I am an enemy. This could not be further from the truth, and is not an accurate reflection of my heart or my character." Unfortunately, Drew, white people like you are the "enemy," as you put it, because by default you are at the very least part of the problem. No one is accusing you of being an overt racist, Drew; no one thinks you actively and consciously detest Black people. But your lack of empathy, your apathy, and your unwillingness to unlearn your own biases are precisely what has persisted in the hearts and minds of well-meaning white Americans for centuries.

Next, you say, "I recognize that I am part of the solution and can be a leader for the Black community in this movement." No, Drew. Just no. Black people don't need white people's savior complexes to interfere in their organizing; what they need is for us to shut up and listen. What they need is for us to get our knees off of their necks.

Finally, you say, "I have ALWAYS been an ally, never an enemy." This, Drew, is suspiciously similar to saying, "But I'm one of the good whites!" The fact of the matter is that feeling the need to prove your allyship is not about helping a movement; it's about feeding your own ego. Not only that, but your emphasis on "ALWAYS" does a pretty good job of making it clear that you don't think you have a racist bone in your body and that you have taken great offense at any accusations to the contrary. I have some news for you, Drew: Every white person is racist. Sure, the levels vary, and while you may not be actively and consciously discriminating against POC, you have been brought up in a racist system, and your implicit biases are as strong as any other white person's. Your job now is to unlearn those biases and confront those subtle prejudices in yourself and in other white people. Maybe the first step in doing so is just shutting your f*cking mouth about kneeling at football games. Maybe you should even consider taking a knee yourself.

For other non-BIPOC trying to be better allies, check out one of these 68+ anti-racism resources.

CULTURE

Jameela Jamil Comes Out as Banksy

Jameela Jamil has received unnecessary bullying for being open about her struggles on social media, so now she wants everyone to know the truth.

Finally, we know the truth.

The famed artist Banksy, who has remained anonymous for decades, is actually the actress Jameela Jamil.

For anyone who's confused: This is a joke Jamil made because she has been the subject of a great deal of conspiracy theories and online vitriol lately. She was accused of having Munchausen's, which is an illness that causes people to believe they're sick with disorders that they don't have. But Jamil clarified that she actually suffers from Ehlers Danlos syndrome, a disorder that affects connective tissues in the body.

"Being gaslit over your health for entertainment is a very specific pain and trauma that a lot of people with Ehlers Danlos/invisible disability have to face every day from people who don't understand our vastly under-researched condition. And to what end? Who wins?" she wrote. "If I was an oil tycoon destroying the planet, or a serial sex offender I would maybe understand this vitriol and effort to target and harass me. But I'm just a mental health/eating disorder advocate actually taking the time to change public policy and legislation to protect kids."

The Good Place star has become noteworthy on the Internet for her dedication to anti-diet-culture activism. She's also spoken about mental illness and her chronic health issues, but every time she speaks out, Internet users seem to take pleasure in attacking her.

Her boyfriend James Blake came to her defense today, speaking out about how he has personally witnessed his girlfriend's illnesses, which some Twitter users were questioning.