When I first heard about “Afflicted” on Netflix, I was elated.  I immediately logged on to begin watching. Finally! A mainstream feature on the state of chronic illnesses and invisible disabilities.  Finally! A scientific and empathetic view into the world of difficult to diagnose illnesses and the struggles we face daily to be taken seriously!

“Afflicted” is a Netflix series by Dan Partland which follows seven people with chronic illnesses with “baffling symptoms,” “controversial diagnoses,” “costly treatments,” who are in “search for answers — and relief.”

The featured characters include those with various “controversial diagnoses,” such as Myalgic Encephalomyelitis (ME), Electromagnetic Hypersensitivity (EHS), and Multiple Chemical Sensitivities.

Just doing a quick Google search on “Electromagnetic Hypersensitivity” should tell you all you need to know what the public and medical community think about these diagnoses.The first hit is a Wikipedia article that states that EHS is a “claimed sensitivity to electromagnetic fields” which has “no scientific basis and is not a recognised medical diagnosis.”  How’s that for a “controversial diagnosis”?

I guess I should have sensed that something might not be quite right when the show’s trailer caption was, “Seven people struggling with mysterious ailments encounter skepticism from doctors and loved ones who wonder if it’s all in their heads.”  

But I was hopeful and naiive.

“I think you’re looking for attention… You should go find a therapist.”

Just last year, I spent half a year trying to figure out what was going on with my body as it began to deteriorate rapidly.  Nagging chronic pain that began in my right foot expanded rapidly all over my body, from my elbow to shoulder to fingers to even my jaw.

The intensity increased as the weeks went on, and somehow, I began doubting my initial assumption that I had a foot injury from running too much the year before.

For a while, I self medicated with a lot of pain killers, and hobbled around.  I knew from personal experience and those of others that women’s pains aren’t taken seriously, and we are often dismissed as being “hysterical” – a historically sexist way to dismiss real illnesses or deviance from the gender norms.

I didn’t want to be seen as an attention seeker, or making a fuss.  Even as my range of motion began to contract so much that I couldn’t do most tasks of daily living comfortably.

Months later, when I finally cobbled together the courage to go see a doctor, he dismissed my pain.  Despite obvious excruciating pain, multiple swollen and locked up joints that increased in numbers every time he saw me, and extremely abnormal blood test results, he remained firm in his opinion that I should go find a therapist instead.

“Honey, you’re at the wrong doctor’s office!”

After months of being gaslighted and told that I’m just seeking attention, I changed doctors.  Maybe the doctor was right, I thought for a while. Maybe all of this pain is just an extension of normal sign of aging (I was 27).

I mean, I could still hobble around, right? It was excruciatingly painful, but I wasn’t bedbound yet – even if I took 4 pain killers everyday just to get out of bed.  Even if I slept with my hand wrapped up tightly with a towel to keep from waking up in the middle of the night with my fingers locked up in a “claw” position in pain, looking like a cat about to pounce on a mouse.

Immediately after seeing me for the first time with my visibly swollen and purple joints and restricted range of motion, my new doctor sighed, shaking her head.

“Honey, you’re at the wrong doctor’s office. I can’t help you here. You need to go to a rheumatologist immediately.”

She ran the same inflammatory marker blood tests that the previous doctor ran, and in the span of the week between his test and her test, my values had gone up exponentially (though it was already quite high).

She put me into the office of a rheumatologist at Columbia Medical Center the same week.  And after the initial visit, he shrugged and said, “I’m going to run more blood tests just to be sure, but I will be extremely surprised if this is not Rheumatoid Arthritis.” Simple as that.

He had me start on a chemo pill regimen of Methotrexate, one of the first line of treatment for Rheumatoid Arthritis. It worked remarkably.

“So… Is this person REALLY sick, or are they just attention seeking and lazy?”

As a result of prolonged inflammation, a few of my fingers have the Swan’s Neck Deformity – a condition where your finger is bent permanently in an unnatural fashion due to injury to the tendon in the finger.  Now, that is one of the only physical markers of my year and a half battling severe chronic pain.

My story has a “happy ending.”  It “only” took half a year of progressive mobility restriction, “losing” new joints every few weeks to the chronic pain, and feelings of fear and uncertainties for the future before I was diagnosed.

And Rheumatoid Arthritis has blood tests that can “prove” that this condition exists.  (Though the high values on the blood tests didn’t stop the first doctor from trying to convince me to go see a therapist instead of a rheumatologist.)

Throughout the series, we were taken through a wild goose chase of “Meet the Kardashians” type of drama, family members pulling each other down, and the constant question of, “So… Is this person sick for real, or are they just making it up?”

When people with chronic illnesses are used as props for a “Reality TV Show” without consent.

In “Afflicted,” instead of scientific research and information about the rare or difficult to diagnose disorders and diseases, we get Peter Osborne, DC, the clinical director of “Origins Healthcare.”  Dr. Osborne has a Doctorate in “Pastoral Science” – someone who “practices ‘Bible-based’ health care”.  He treats Pilar, one of the more divisive characters in “Afflicted.”  

Pilar is “allergic to everything” – including her husband – and has been living in seclusion for two years.  The cinematography portrays her as an unloving wife, manipulator, and one who takes financial advantage of her husband.  She openly admits that she doesn’t see her husband as a husband anymore, and maintains absolute control over her surroundings and daily regimens, seen often ordering her husband around.

Because of her conditions, she does not work, and her 50 year old husband has moved back in with his parents so he can afford the apartment for her.  He even took on a second job once his savings ran out, because none of the alternative treatments Pilar partakes in is covered by insurance. By the end of the series, despite Pilar’s husband’s desire to “make it work,” the couple admits that Pilar is seeking divorce.

You can’t “think” your way to health.

In scenes spliced in to those where he is treating Pilar, Dr. Osborne condones the use of lies – he calls them placebos – to facilitate the patient’s “ability to heal.”

“Placebo is a tool we can use as doctors,” he says.  “And that doesn’t mean we lie to our patients or mislead our patients, but I think, as doctors, we have to start from the premise of giving our patients the ability to heal.”

He calls Pilar’s reactions to her surroundings – as a patient with Multiple Chemical Sensitivity – a psychosomatic response.  He thinks Pilar is suffering from a psychiatric illness, not a physical one. As a result, he lies to her in order to have her “think” she is getting better, and calls it a “placebo” treatment.

“We were told it was an investigative documentary.” Instead, it’s a Reality TV show poorly disguised as a Docuseries.

Jamison Hill was one of the first featured person afflicted with chronic and untreatable chronic fatigue.  As many others in the series, he has been diagnosed with multiple conditions, but currently have the diagnosis of Myalgic Encephalomyelitis (ME) – also known as Chronic Fatigue Syndrome (CFS).  

According to National Organization for Rare Disorders (NORD), ME/CFS is an acquired and complex disorder where patients experience fatigue, weakness, sickness, cognitive dysfunction, symptom flare-ups following physical or mental exertion, headaches, pain, muscle weakness, abnormal vision, and numbness amongst other symptoms.  It is a chronic and disabling disorder, and can leave the patient bedridden in the most severe of the cases.

This was the case for Jamison.  Because of the still mysterious nature and cause of ME, there is still no consensus on the classifications amongst the medical professionals.  “Afflicted” used this uncertainty to play the “So is he really sick, or is he pretending?” game. Even though they interviewed industry leaders in the realms of ME/CSF, they neglected to include the interviews.  Instead, they left off with a doctor who did not agree with his ME diagnosis.

As Jamison told me in a short conversation we had, “The producers led me, and I think the other participants as well, to believe that this was going to be an investigative documentary, which looked at people with chronic illnesses through a compassionate lens. It isn’t that. Not at all. It is, by all indications, a reality TV show disguised as a docuseries.”

“Progress has been made over recent decades; I fear it is being reversed.”

Jill, another participant with Multiple Chemical Sensitivity – echoed his sentiments in her blog post: “I had no idea that the ‘documentary’ would be a reality show that asks the question Is this real? Are they crazy? Had I known, I would never have signed up.”

In the end, this show is a reality TV show, looking for sensationalism and entertainment from “freak show of hypochondriacs” rather than an educational docuseries about rare and difficult disorders that plague real life people in devastating ways.

And we are disappointed because “Afflicted” could have been so much more.  It could have brought acknowledgements of the difficulties people with chronic illnesses live through daily.  It could have provided scientific backings to the often “absurd” claims of people experiencing certain sensitivities.  Instead, it encourages society and medical professionals to continue to regard those with chronic illnesses and disabilities with contempt and skepticism.

In words of Jill, “Progress has been made over recent decades; I fear it is being reversed.”