In late February 2019, I posted a picture of me standing in a hospital bathroom, wearing a patterned gown and an opened-mouth grin, on Instagram. A tube of Sensi-Care Protective Barrier cream (look it up) is visible on the shelf. The photograph’s caption contains an explanation for how C. diff — a bacterial infection of the colon and the cause of my hospital stay — had induced a newfound appreciation for everything I already had, and loved, in my life. The comments were swift and appreciative, and I reveled in the glut of encouragement and well-wishes. It was nice to feel like I had won against something. I periodically revisit the post, if only to scoff in amusement at my filtered memories.
Because the days of misery preceding the photo are not depicted, of course: the moments when I defecated on myself in the hospital bed or on the floor en route to the bathroom or over the toilet while trying to simultaneously apply barrier cream to keep torn skin from reopening.
It was nice to feel like I had won against something. I periodically revisit the post, if only to scoff in amusement at the filtered depiction.
The helplessness of it all isn’t captured, either. The flood of joint pain that traveled with the infection and the months of paranoia over its possible return are also omitted. It is a snapshot, taken impulsively in the euphoria I experienced when I was told I’d be discharged — deliberately self-flattering and decidedly detached from the context it pretends to highlight.
To relay any experience in its full, unvarnished context is difficult — particularly through the flashes and fleeting blurbs of social media. Jameela Jamil, an English actress and model and the founder of the inclusivity advocacy group I Weigh, is in the midst of an unusual controversy involving the writer Tracie Morrissey and the validity of claims Jamil has made on various social platforms about her own health. Morrissey has posted screenshots of Jamil’s accounts of numerous accidents, illnesses and food intolerances using interview quotations and posts dating to 2015. The non-exhaustive list (which Morrissey said was still being fact-checked and researched and was not intended to be read as a piece of official reporting) refers to Jamil’s brushes with cancer, childhood deafness, suicide ideation, celiac disease, mercury poisoning, an eating disorder, a peanut allergy, broken bones and Ehlers–Danlos Syndromes, or EDS, a group of disorders that affect connective tissues.
In response to Morrissey, Jamil tweeted Wednesday that an “unhinged idiot” was accusing her of suffering from Munchausen syndrome, a mental illness in which people repeatedly falsify medical diagnoses or psychosomatically cause their own symptoms. Jamil went on to defend her history, explaining that EDS is an invisible illness and that having it meant “always having people doubt your illness and injuries because you look okay.”
I’ll admit that I can’t quite relate to Jamil’s particular brand of health advocacy. Her social feeds are dotted with selfies taken during emergency room visits and IV drips and usually conclude with inspirational quotes on love and acceptance. Jamil is the narrator of her own story, but her narrative sometimes feels unreliable. One could be forgiven for being wary of the pace at which she discloses, or retracts, personal information. Adding to public skepticism was her recent and seemingly spontaneous coming-out as queer — an announcement she made after receiving backlash for her involvement in the coming HBO ballroom series “Legendary.”
And yet, 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 valid and important. “Well, you look great!” is a statement tediously familiar to nearly anyone with a chronic condition that manifests below the bodily surface. In the five years that I’ve been treated for three separate autoimmune diseases, none of which are immediately perceptible, I’ve heard it plenty.
The problem is that, culturally, with illness narratives, there are so few compelling options to choose from.
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.
Stories about chronic illness have a tendency to appear on blogs overstylized and in flowery language, or to come pre-emptively loaded with terms like “healing journey.” Speaking or writing about illness has historically meant speaking or writing about overcoming illness. It has meant being “brave” or “filled with gratitude.” Illness appears as a convenient vehicle for teen romance in film or on the cover of tabloids in the co-opted language of war: “How I Won My Battle With [Insert Illness Here].”
Rarely do these depictions capture the 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.
And yet most chronic diseases — certainly in my experience as a patient — develop slowly, are poorly understood and manifest in vague symptoms. They reach points of stasis, only to relapse. Research into what causes them is nascent and statistical evidence hard to come by. Common colds make sense; chronic illnesses do not, and they rarely match the cultural perception of what it means to look “sick.”
As Morrissey’s social media investigation gained traction last week, so did the accusations of Munchausen syndrome from Jamil’s critics. The comments — “I always knew there was something off with her!” — rang with a kind of perverse schadenfreude. Presumably, none of these commenters has medical expertise in EDS or has treated Jamil as a patient. Jamil’s partner, the singer James Blake, responded to the “disgusting” claims, stating that none of these people “know what her life has been.”
For those of us living with chronic health conditions, the last thing we need is a chorus of outside voices denying the validity of our pain.
Several years ago, during treatment for my first diagnosed autoimmune condition, Grave’s disease, I underwent radioactive iodine treatment to shrink my overactive thyroid gland. But even though I was meeting with a team of highly qualified specialists, I couldn’t shake the belief that, perhaps, there was no disease to begin with — that I was making the whole thing up, performing illness for the sake of attention or, worse, self-loathing. I experienced the same paranoia when I was diagnosed with Type 1 diabetes. Occasionally, I still ask my endocrinologist in a joking, nervous voice: “This isn’t my fault, right?” The sense of culpability that pervades chronic illness can be a gnawing, wicked companion to the illness itself.
Jamil may be an imperfect protagonist, but perpetuating the idea that someone else’s experience of illness is invalid is gross and reckless. We 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. For those of us living with chronic health conditions, the last thing we need is a chorus of outside voices denying the validity of our pain — the volume is already loud enough within.