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.

My Response To The Allegations.
Remember when internet personality Jake Paul took a foray into mental health advocacy?
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In “Modern Love,” Anne Hathaway Shows Us Love Can’t Fix Bipolar Disorder

The show, based on Terri Cheney's column of the same title, provides a uniquely nuanced depiction of mental illness—and highlights the gaps that still exist in the ways we tell stories about it.

On the episode of Modern Love called "Take Me As I Am, Whoever I Am," Anne Hathaway's character Lexi spends half her time in bed.

She spends the other half of her life gallivanting around New York City, wearing sparkles and styling herself after famous actresses, asking out men in grocery stores and making up for the time and the lovers she lost while she was catatonically depressed.

At best, the episode is a uniquely nuanced depiction of real mental illness, emphasizing the fact that Hathaway's illness may not be easily curable, refusing the temptation to glamorize her symptoms or suffocate her with pity and pessimism. At worst, it still falls into some old traps and perhaps could've done a better job of explaining the specifics of Lexi's diagnosis and the actuality of what bipolar is and is not.

Like all the episodes of Amazon Prime's new series Modern Love, it's based on a real-life story published in The New York Times' column of the same name. Hathaway's character is based on an essay by a woman named Terri Cheney, who specifies in the first paragraph that she suffers from what she refers to as "ultrararidian rapid cycling."

There are many different forms of bipolar disorder, far more than the typical binary of Bipolar I and II imply. Bipolar I, the best-known type, involves periods of severe mania and severe depression, whereas with Bipolar II, the manic episodes are usually slightly less severe, though periods of depression can be extremely intense. With both of these types, lengths and symptoms of manic and depressive episodes can vary, though most people experience one or two cycles per year, with episodes lasting around 13 weeks, according to a 2010 study. Episodes can be triggered by events such as seasonal changes, trauma, or grief, but they can also happen naturally due to to the vicissitudes of brain chemistry and daily life. Sometimes symptoms of mania and depression can co-occur, and this is referred to as a mixed episode.

There are many other variants of bipolar disorder, including cyclothymic disorder, which describes brief periods of mania and depression that are slightly less severe than full-on Bipolar I or II. Then there's the kind of extremely rapid switching that Hathaway's character experienced. Affecting 10-15% of people diagnosed with bipolar disorder, rapid cycling is officially diagnosed when someone experiences four or more cycles in one year. Ultra-rapid cycling is when a person cycles through episodes in one month or less, and the sort that Cheney and Lexi have is called ultra-ultra-rapid cycling or ultradian cycling, which means that cycles can occur within a 24-hour period.

As with most mental illnesses, every person's diagnosis is different. For Cheney, ultradian cycling means that she'd often spend days or weeks in bed, only to awaken suddenly to the sound of birdsong and a feeling of euphoria. Like her TV adaption, Cheney tells us that she tried dozens of treatments, including dangerous electroshock therapy, while keeping her illness secret from friends and family and making up for her down periods by exceeding expectations when she was up. She was able to pull together a life, but all this didn't make dating easy. "When dating me, you might go to bed with Madame Bovary and wake up with Hester Prynne," she wrote in her Times column.

Refreshingly, neither Cheney's essay nor the TV adaption equates the right treatment or the perfect person with a cure and a happy ending. Instead, after following their protagonist through a failed relationship that began during a manic episode and quickly tanked when her mood turned, the essay and show end with a bit of realistic hope. "I've finally accepted that there is no cure for the chemical imbalance in my brain, any more than there is a cure for love," Cheney writes, lines that Hathaway repeats in the episode's conclusion. "But there's a little yellow pill I'm very fond of, and a pale blue one, and some pretty pink capsules, and a handful of other colors that have turned my life around."

Battling the Stigma Onscreen: Violence, Love, and Bipolar Representation

While illnesses like depression and anxiety have become more socially acceptable and widely understood (although too often they're still not viewed as valid illnesses, instead treated like something that can be willfully overcome with a little yoga), bipolar and other personality disorders are still heavily stigmatized and misunderstood.

For example, people who suffer from personality disorders are far too frequently blamed for things like mass shootings, when actually only 3-5% of violent crimes are perpetrated by people with mental illnesses (and 97% of mass shooters are white males with histories of misogyny and domestic violence).

In reality, bipolar disorder has absolutely nothing to do with violence. It's also completely untrue that people with bipolar are unable to have relationships. Everyone is different, and people with bipolar disorder are just as capable (or incapable) of loving and being loved as anybody else.

While Hathaway/Cheney's illness appears to be unusually unpredictable, many people with mental illnesses can and do thrive in relationships. While unstable relationships can have particularly negative and triggering effects on people who suffer from mental illnesses, stable relationships of any kind can be incredibly beneficial. And while no one should use their mental illness as an excuse to use others as therapists or sole support systems, supportive friends, partners, and family members can be vital in terms of providing the kind of acceptance and structure that people with mental illness may have trouble giving themselves.

Still, it's a blessing that "Take Me As I Am, Whoever I Am" doesn't over-glamorize the effects or importance of relationships. Anne Hathaway's Lexi finds relief in confessing to a coworker about her illness, but there is no implication that the coworker will be able to heal her or support her in any way. Confession and interpersonal love are perhaps over-emphasized in some forms of modern mental health discourse, but premature or forced confessions can have negative consequences, and confession by no means make up for actual treatment, large systemic changes, or genuine external and acceptance. Sometimes, acceptance means accepting the reality of illness and treatment in all their ugly and unpalatable forms, a reality that is too often forgotten in exchange for the more palatable narrative that tells us that love can heal all wounds.

The Future of Bipolar on TV: Hopefully More Diverse, and Created by People Who Really Suffer from Mental Illness

For her part, Terri Cheney, a prolific writer who has written several memoirs about her experience with mental illness, is apparently very satisfied with Hathaway's nuanced portrayal. "When you think of the illness in terms of a familiar face, it's less frightening and easier to understand," she told Glamour. "That's why having someone as famous as Anne portray a woman with bipolar disorder is so terrific: It's an antidote to shame."

As in her essay, Cheney is quick to emphasize the fact that sometimes there is no cure to mental illness; it's not like you can just confess that you have it and expunge it from your brain chemistry. "After a lifetime of living with a mental illness, I've discovered that the most helpful thing someone can say to me when I'm suffering is, 'Tell me where it hurts,'" she added. "I don't want advice. I don't want to be cheered up. I just want to be listened to and truly heard."

Hathaway also seems to understand the importance of her role. "I have people in my life who I love so deeply who have received various mental health diagnoses, and that's not the whole story of who they are," she said. "But in many cases, because of an intolerant society, that's the space of fear they're kept in."

As there's more mental illness representation on TV, hopefully we'll see more nuanced portrayals of people with mental illness. Many Hollywood shows and movies have heavily exaggerated the symptoms of bipolar disorder, giving characters who suffer from the disorder violent narratives or dramatic breakdowns (Empire, Silver Linings Playbook), painting them as anti-medication (Law and Order: SVU) and using episodes as plot devices (Homeland), despite gaining praise for featuring characters who suffer from it.

Perhaps in the future, shows will also begin discussing the disorder in more precise terms and becoming as open and explicit about treatments, medication, therapy, and the messy vicissitudes of daily life as they are with dramatizing mental breakdowns and choreographing manic episodes.

Maybe they could also try to focus on people of different race and class backgrounds, as mental illness is frequently whitewashed, though it cannot be separated from things like race and class, and certainly not everyone with bipolar has a swanky entertainment law job or lives in an apartment like Anne Hathaway's utterly absurd one. Perhaps Modern Love itself shouldn't be expected to get real about mental illness, for even this episode does feel lost in the show's saccharine, wealth-buoyed rom-com vibe, caught up in the "permanent delusion that New York makes people fall into a special kind of love, unattainable anyplace else (unless on a brief trip abroad)," as The Washington Post writes, a delusion that anyone who actually lives in New York knows is utterly untrue (but that always makes for a hit TV show).

Still, when all is said and done, there will never be a singular or perfect depiction of bipolar disorder, and a depiction of mental illness on a show like this one will certainly expose lots of people to a sympathetic narrative they otherwise might not have encountered.

Like all illnesses, bipolar disorder is an ongoing process that affects everyone in a completely unique way, and there is no quick fix for it. But with medication and support, it's something that's possible to live and thrive with—and yes, to love with.

Though Lexi never finds true love, she finds something else. She finds self-acceptance, openness, a growth mindset, and the belief that she isn't in need of fixing. And in this life, perhaps that's the best kind of fairy-tale ending we can ask for.