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."
I would have spoken on this earlier but Jameela asked me not to. Please read x https://t.co/edpC3BRwd8— James Blake (@James Blake)1581700483.0
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.
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