Jake

The question that could and should have been answered

Under the pretense of raising awareness and giving a voice to quietly suffering people, I was invited to be part of a documentary series on Netflix called “Afflicted.” This is not what my participation yielded, which is the unfortunate result of the egregious mishandling of my story in the edit — a creative decision that is reinforcing the idea that chronically ill people must always be viewed through a lens of skepticism, if not incredulity. That same idea calls into question the mental well-being of anyone who suffers in a way that is not overtly visible, regardless of whether there is medical evidence to suggest otherwise. Herein lies the most nefarious offense of the docuseries: it’s inability and perhaps outright refusal to answer the question it surmises. “Are these people really sick?” is the undercurrent narrative of the entire series, with full episodes even being named after that premise. A fair question. However, this question becomes problematic when the creative team intentionally leaves out the answers to that question — answers which were given by the participants, filmed, and then neglected.

The assumed answer to that question is “no” in any context in which the audience is left to their own devices without evidence to suggest the opposite. It’s more than just irresponsible. It’s dishonest and dangerous. It’s errant for a documentarian to be selective about evidence. And worse, it’s causing damage to an already marginalized and suffering community of people, evidenced by the recent twitter-storm.

I’ve read snap reviews from doctors, nurses, ER technicians and other medical professionals online who are mocking our behavior — relishing in their own eye-rolling as they watch our lives unravel. This doesn’t just speak to the heinous role stigmatization has in the lives of the chronically ill as we deal with less-than-scrupulous doctors. It also suggests the role that media has in reinforcing those ideas. “Afflicted” may be twenty-plus years late to the skeptic’s party, but it’s still being celebrated by the medical peanut gallery online. You can see why it’s no small thing to add another voice to the mob which says we want to be sick, that we find some benefit in relinquishing our dreams in favor of a bed, that we’d choose to abandon the sun for a life lived mostly in darkness, that we have no reservations about taking advantage of our loved ones, and that we don’t weep and ache over the burden we’ve become.

“Afflicted” would have you believe the most obvious lies about chronically ill people, that we are unwilling to get better, that we haven’t tried, and that we don’t listen to our physicians if it would benefit us. None of this is true, and there is a mountain of evidence that would have cleared all of that up. Instead of showing that evidence, they used precious time in the series to espouse dozens of out-of-context quotes from unrelated medical “experts” who had never spoken to us, met us, or evaluated us in an way — used as an underhanded tactic to present an armchair diagnosis of mental illness. This is a universally unethical practice in the psychiatric field. The directors used these quotes to promote the same skepticism through nearly every episode, shedding doubt across our every word and action. It went unanswered for all seven episodes.

The reality of my situation is that I currently have chronic low white blood cell count for which I see a hematologist/oncologist every three months due to concerns that it may be a precursor to cancer, low red blood cell count, chronically swollen lymph nodes, positive Epstein-barr virus, tachycardia, tinnitus, and depersonalization disorder. I had Bell’s palsy when I first became ill, followed by bouts of fever and vertigo. I’ve suffered from low body temperature, sudden deafness, confusion, brain fog, memory loss, sound and light sensitivity, lightheadedness, sudden black spots and tunnel vision, cluster headaches, neck pain, post-nasal drip, sleep apnea, loss of appetite, dramatic weight loss, heart palpitations, erratic blood pressure, surreal invasive nightmares, and a host of other symptoms that range from frightening to abstract.

There is no debate among my doctors — my primary care doctor, ER technicians at my local hospital, my psychologist, oncologist, infectious disease doctor, neurologist, cardiologist, or any of the alternative medicine practitioners — as to whether or not I’m physically ill. Even the urgent care physician I saw, who was heard in Afflicted suggesting I consider anxiety medication, also suggested I get a d-dimer test, a blood test which checks for potential blood clots. This would have legitimized my concerns of a deep vein thrombosis, but they left that out. The docuseries also neglected to mention that each of us had to pass a psych evaluation to participate in filming, not to mention, the clean bill of mental health I’d received from a psychologist during the first year of my illness. But most people watching Afflicted will never know this, because nearly all the medical evidence as to the organic nature of my condition was excluded. The question could and should have been answered: “Is he really sick?” Yes. Yes, he is.

I am ashamed to admit, upon first viewing, that I neglected my true feelings and the obvious missteps and omissions of the edit. I wanted to believe the filmmakers had our best interests in mind and that the docuseries was what I had desired it to be: a fair and honest representation of chronic illness that would give a voice to the voiceless and a sense of solidarity to those who suffer alone. It was not that. And upon my second viewing, it all became quite clear. I took note of the way my words were manipulated and how my actions were edited between suggestive clips of psychiatric professionals making unrelated claims of mental illness. A specific instance was a skype call I had with my best friend, Olan Rogers. In the clip, you slowly watch me devolve into a sad, unresponsive person, unwilling or unable to engage him in conversation. This is not what happened. Oddly enough, you can even see me speaking and laughing in the skype window on my computer during the cuts where they chose to edit me as silent. There’s no reason to do this. Why not show our relationship for what it was? Why imply drama where there is none? The answer is obvious: entertainment, drama, sensationalism. It certainly isn’t in the spirit of honesty or sincere documentary filmmaking. The series is plagued with these edits. Another unsettling instance was during my visit to the Hansa Center. They Frankenstein-edited my description of the lymphatic treatments I was receiving to make them seem even more bizarre and ridiculous. They cut several times during my explanation of their methods to make it seem like I was implying that it’s all basically electromagnetic therapy and lasers. These two ideas were said not in relation to one another. In fact, I talked about some of the more bizarre therapies at Hansa with a humorous sense of skepticism, expressing my own doubt that these treatments would work, but before I expressed that on screen, they cut it again, leaving the viewer to assume I believe lasers and magnets will heal me. It’s laughable. There are just too many to even mention, and that’s only my story. There were six others.

Every piece of credibility we might have had was either omitted or reduced to the idea of being mentally unfit to promote the same question: “Are they really sick?”

Because they deliberately chose not to answer that question despite having the answers and opportunity to do so, I vehemently and with great dismay reject and discredit the Netflix documentary series “Afflicted” and the ones in charge of the creative direction. I strongly urge all involved to denounce it as dangerous propaganda.

Jake is a composer living in Indiana. You can follow him on Twitter @jakesidwell.

Read more true Afflicted stories here