If life has thrown you with gay abandon onto the exhausting, perpetual merry-go-round of being a young chronic illness sufferer (a ‘spoonie, to use Christine Miserandino’s formative terminology) then somewhere between hospitals, symptoms and medications you may have slowed down long enough to stop for a moment at one of the stranger experiences unique to our kind: the discovery of a celebrity who shares your diagnosis. Perhaps you stumbled across their uncharacteristically sombre social media post on the subject, read a trending article detailing their “opening up” about their (and your) illness, or a well-meaning relative or friend offered you up an emailed link to said content with a subject heading of something gentle and caring yet oddly assertive, such as, “thought you might find this helpful x”.

However it happens, discovering celebrity representation of one of the most traumatic and personal facets of your existence can produce a confusingly discordant stream of emotions and thoughts. On the one hand; great! Raising awareness! More acceptance and understanding! Decreased feeling of isolation! All good, necessary things. But something just doesn’t sit comfortably, because as with all the aspects of celebrities’ lives we consume, their capacity to be truly relatable is limited. In the initial catharsis of feeling connected to a person admired and adored by millions through an experience that mostly feels so lonely and hopeless – of feeling seen – it can be easy to momentarily forget the vastest gulf between yourself and the star who suffers as you do: exorbitant wealth.

 

Money is unequivocally the most effective treatment for a person disabled by chronic illness. Money buys health. It guarantees not just fast, premium medical treatment, but also those minor, deceptively expensive adjustments that make a chronically ill person’s life more liveable. Adjustments like: transportation, mobility aids, specialised dietary foods, general assistance both domestic and in public; every disabled person’s list is different. Whatever your individual needs may be, each small aid strengthens a wider framework of support, effectively allowing you more time to spend on being a human being and less on daily maintenance of your health – time which is vital to even the playing field between us and the able-bodied. When we read content about celebrities’ struggles with illness, whether in interviews or on social media, we are not always mindful of this enormous gap in privilege, and neither are our able-bodied peers, which can lead to unfair comparisons.

Common, good mental health advice warns us not to compare ourselves to what we see on celebrities’ social media, but often this is centred around unattainable #bodygoals and airbrushed selfies. Why, when it comes to chronic illness, are we so often held to the same standard as celebrities? Is wider representation of illness and disability in normal people really so lacking? In short – of course. It is 2018, yet media that deals with disabled people is rare in itself, especially those living with chronic illness, and the majority favours stories of the privileged (see: The Theory Of Everything, Breathe, Me Before You, The Intouchables, Still Alice, Cake, etc.). TV shows and films that pass the Fries Test (disability’s own Bechdel test equivalent), ie. are watchable, remain rarer still. For most sufferers, celebrities are the only representation we have in popular culture and the easy, instant accessibility of social media can make it feel as though we’re on the same footing as them.

That being said, celebrities have a responsibility to be somewhat conscientious about the content they produce and the statements they give and, encouragingly, some are. In her recent Self magazine interview, Jane The Virgin actress Gina Rodriguez is quick to highlight the costliness of good, nutritious food when discussing the ways she manages her Hashimoto’s disease, recognising her privilege and thus not patronising her interviewer, a Hashimoto’s sufferer herself: “…for those who don’t financially have the resources, it always pains me”.

However, Rodriguez’s commendable tact and self-awareness is in a minority. “Getting real” on personal issues is increasingly common amongst popular celebrities, but when it comes to wealth, it is uncommon to see similar candour. In a cover feature for The Edit, fellow actress and Hashimoto’s sufferer Zoe Saldana was quoted on her illness; “you create antibodies that attack your glands, so you have to eat clean”, with little elaboration. While eating clean has no doubt been effective in Saldana’s own health journey, it is reductive of her, or the publication’s editor, to not only imply that nutrition is a requisite, accessible or even effective treatment for all Hashimoto’s sufferers, but to omit a disclaimer on what the majority of patients will be offered via free or subsidised healthcare, which is first and foremost medication.

Two other occasional purveyors of similar behaviour are the Hadid sisters, Bella and Gigi; supermodels who suffer from Lyme’s and Hashimoto’s disease respectively. Born into Real Housewives of Beverly Hills-worthy privilege, the Hadids possess wealth atop wealth. In retaliation to trolls accusing her dramatic weight loss of being unhealthy or even caused by drug use, Gigi made a public statement clarifying that in fact being “properly medicated” and part of a “holistic medical trial” for her Hashimoto’s was the truth behind her altered appearance. Many able-bodied people will have taken her comments at face value, however Hashimoto’s sufferer and blogger Rachel Hill articulated on her blog what many chronic illness sufferers were thinking: “whilst it’s great that such a high profile is bringing awareness to the disease…her case doesn’t parallel with many ‘ordinary’ people. And this is important to be aware of.” At a Global Lyme Alliance gala, Bella touchingly dedicated her award to “all the teenagers out there that have really gone through what I’m going through and have suffered from this disease”, adding, “I know where you’re coming from, you’re not alone.” It’s heartening to see her using her platform to draw attention to other sufferers of Lyme’s and express solidarity with the community, but, with respect, how could she truly understand the extent of what an average sufferer is going through? Solidarity is important but it conflates a celebrity’s exceptionally advantaged position with that of the sufferer who cannot access the same resources, further raising an expected level of productivity for average Lyme’s sufferers from able-bodied societal pressure. It would go much further in instigating change for celebrities to acknowledge or even highlight the real financial barriers that obstruct average sufferers from living more fulfilling lives.

In terms of social media, most chronically ill mega-stars tend to show minimal suffering and the majority employ a more marketable, glamorous aesthetic, which is their right. It isn’t a question of proving an ‘acceptable’ level of illness to anyone – which, to be clear, no chronic illness sufferer, especially those with invisible symptoms, ought to be expected to do – but rather being conscious of their platform’s scope, and the subsequent danger of becoming a universal ambassador for an illness of which the lived reality can be highly individualised. Lupus sufferer, singer and, as of this article, most-followed Instagrammer Selena Gomez is a celebrity who has shown admirable self-awareness and respect to other sufferers in interviews discussing her extraordinary story, yet a casual peruse of her feed (comprised mainly of stunning selfies and high-profile brand campaigns) would leave you oblivious. Actress and writer Lena Dunham’s penchant for publicly divulging her inner feelings has, despite several ensuing problematic P.R. blunders, made her struggle with endometriosis far more identifiable with the chronically ill community. Frequently posting on her social media about the day-to-day mental and physical experiences of chronic illness amongst her regular work and lifestyle content helps to normalise endometriosis, not just for other sufferers, but also for able-bodied fans.

Ultimately, celebrities with chronic illnesses are never going to represent the diversity of the entire community perfectly and without criticism. Their wealth may decrease the challenges they face, but it doesn’t invalidate their struggle. Besides, the burden of responsibility for education and awareness of chronic illness shouldn’t fall solely on its sufferers, no matter what their fame or financial status may be. Able-bodied society has a duty to listen to the disabled minority and speak up for those who are struggling to be heard in a culture where we are all too often overlooked and belittled. Lupus, Endometriosis, Fibromyalgia, Lyme’s, Multiple Sclerosis, Hashimoto’s, Dysautonomia, Crohn’s, Myalgic Encephalomyelitis; these barely scratch the surface of all the long-term, debilitating and often outwardly imperceptible conditions that millions of people struggle with every single day. Yet, they are relatively unknown and regularly misunderstood, not only in mainstream society but even occasionally by healthcare professionals. We can’t be blamed for turning to celebrities to fill an obvious gap in information and representation so vitally needed for us to feel validated, encouraged and understood. However, celebrities aren’t expected to be universally applicable living handbooks for the able-bodied and so we the chronically ill community deserve the same level of understanding.

 

 

 

 

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