3 Ways Netflix’s “Afflicted” Hurts People with Chronic Illness

3 Ways Netflix’s “Afflicted” Hurts People with Chronic Illness August 26, 2018

 

As I drew up the syringes for my son’s morning medications, I thought about the new Netflix docu-series Afflicted. The show follows the stories of patients with chronic illness. I finished the series last night. This morning I felt sick to my stomach thinking about the damage the show does to the chronic illness community. My son and I are entrenched in a world similar to what the cast of Afflicted faces. We live a secluded life out of necessity and spend a lot of time at the hospital. Today I am reminded how much people distrust individuals like my son because of his illness. Producers painted the cast as liars, hypochondriacs, and quacks for trying experimental treatments. Afflicted harms all chronically ill people in three critical ways.

Controversial Disorders create Hypochondriac Narrative

The cast all have disorders that are mysterious. An unknown disease is not uncommon in the rare disease world. Medicine is continually learning about the disease. Scientists discover new conditions all the time. The producers picked illnesses that are not currently recognized by the medical community to paint the cast as hypochondriacs with severe mental health issues.

Electromagnetic Hypersensitivity is not recognized as a disease or disorder. The World Health Organization acknowledges that the disorder may be real but scientific data hasn’t proven it yet.

All diseases start in this exact place. Until you have supporting scientific data, there is no way to classify disease. That doesn’t mean it’s not real.

Lyme disease is hard to diagnose due to false negatives. Lyme disease is the result of a deer tick bite and bacterium Borrelia entering the body. Patients take antibiotics to kill the bacteria.

Even with antibiotic treatment for Lyme disease, 20-30% of patients develop neurological issues, fatigue, and chronic pain.

Myalgic Encephalomyelitis (ME) is formerly known as Chronic Fatigue Syndrome. ME is a debilitating disorder that is still being researched and understood in the medical community.

However, the National Organization for Rare Disorders maintains that ME is most likely a result of the bodies abnormal response to a virus or infection. ME can infect the nervous system causing encephalitis or brain inflammation. Individuals with severe ME can be bedridden and significantly disabled for long periods of time.

Multiple Chemical Sensitivity is a disorder where individuals react to chemical exposure in the environment. The American Medical Associations and World Health Organization do not currently recognize the disease. Due to this, there is no standard for treatments for the disorder.

By picking these diseases, producers can manipulate viewers to believe the cast members are not sick. A ton of time is spent in the documentary talking about mental-health and if the illnesses are in their heads.

The producers interviewed doctors to discuss the psychosomatic symptoms the brain can create. Editors painted the cast as hypochondriacs, liars, and quacks for trying unregulated treatments. A considerable amount of time focused on their overall mental health.

While physical illness can cause depression and anxiety, none of the patients in the cast appeared to be suffering from mental health issues. Producers did a massive disservice to the community by making individuals with REAL suffering look like fakes.

Making viewers question the cast does a horrible disservice to anyone that suffers from a rare disease. A rare disease doesn’t mean FAKE disease. Pain and suffering as a result of these diseases are real and not a figment of the cast’s imaginations.

Focus on Questionable Medical Treatments

Afflicted spends a considerable amount of time following patients to unregulated and under-researched “medical” facilities. Many people with chronic illness do seek out treatment outside Western Medicine; producers made a point to leave out the patients real medical providers entirely.

We learned nothing about the cast’s medical diseases, medications, or the doctors that treat them. Producers omitted facts about their diagnosis and treatments prescribed by their providers.

Many of the cast have shared in posts on Medium that the producers pushed and arranged many of the treatments for the cast. Viewers see patients see chiropractors, environmental doctors, and eastern medicine natural paths to treat their disorders. Editors add in voice-overs by doctors to hammer away at the validity of the treatments.

Medical doctors that Afflicted interviewed for the show were not practicing doctors of any of the cast. All of their opinions were merely their opinions and not reflective of the real condition of the patient.

Instead of Afflicted potentially highlighting all the snake-oil salespeople that prey on the chronically ill, they used these treatments to mock the participants. How much time did they need to spend on Pilar’s energy healer?

By showing treatments that are not mainstream, viewers are lead to believe the patients are lying. Additionally, for many patients, my son included, experimental therapies are a hail mary used to alleviate debilitating pain and suffering.

To the uneducated eye, these treatments come off as bizarre and fake. However, many people benefit from many of the procedures depicted in the show.

Overall Focus on Healing and Recovery

For the bulk of the docuseries, producers focus on the healing and recovery aspect of illness. The cast talks extensively about wanting to feel like themselves again. Rightfully they want to recover to their former selves. However, for those of us that live in the chronic illness world, we know there is no such thing as recovery or healing for many of us.

Most people that have a chronic illness cannot be cured or healed of the disease. Chronic disease for most people is on-going and lifelong. Instead of focusing on the permanent impacts of chronic illness, the docu-series chose to focus on recovery as though it is an absolute for affected individuals.

Additionally, the narrative of recovery creates a toxic environment for anyone that suffers from chronic illness. This mindset further perpetuates the notion of disease is all in the “heads” of the ill individual.

Instead of focusing on palliative approaches to improving quality of life, producers elected to focus solely on recovery. Producers could have done an enormous service to the community by showing how palliative approaches can help people live better despite their illnesses.

The Result

For me, watching Afflicted made me angry, hurt, and frustrated with the producers. Many people, including my son, live their lives in excruciating pain. People with chronic illness are not hypochondriacs or faking their diseases.

My families life revolves around the management of my son’s care. There is enough drama in our day to day management to make a story interesting. Adding layers of questionable medical treatment and perceived hypochondria to the docu-series only further perpetuates the stereotype that chronic illness isn’t real.

Viewers end up looking at the cast as liars with made up diseases. Afflicted damaged people with real conditions. More importantly, they damaged the millions of people that suffer through the same illnesses. Controversial illness doesn’t mean the disease is fake.

Finally, my hope is that viewers realize cast members lives are not what they seem. If you don’t believe me, here are links to the stories from the cast:

Bekah’s Story

Jake’s Story

Pilar’s Story

Jill’s Story

Jamison’s Story

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What Are Your Thoughts?leave a comment
  • I have seen some of that series. I have CFS, but nowhere near the degree the man in the show has it. I think that mine arose out of an old severe flu virus.

    It would be nice to hear about other ways of treatment so I was left rather disappointed after that episode.

  • Yeah – I just wasn’t impressed with any of it – to be honest. They really talked nothing about the disorders to even try to inform the audience

  • I agree. I didn’t finish the series for that reason.

  • I finished it to be able to write about it 🙂 My son is seriously sick, and I was actually surprised at how well most of the people functioned despite. I mean none were on oxygen, none had feeding tubes, they didn’t have tons of scripts that I could see outside of supplements. I don’t dismiss pain and feeling yucky. But I live in a world with feeding tubes, syringes and lots and lots of meds.

  • TinnyWhistler

    “You don’t have a diagnosis, so you must not be sick.”

    “Didn’t you get a diagnosis? Why are you still sick?”

  • Pretty much the story of our lives! People do not get that my son’s diagnosis are not curable – so it’s a ton of management but no recovery.

  • TinnyWhistler

    That’s how my best friend is. She got one major diagnosis in college and another right after (and that one she figured out herself before asking a doctor about it, the HORROR), both of which kinda connected the dots so to speak, but there’s not much she can do with the info other than have more backup when she needs to request accommodation.

  • Yeah. We have so many diagnoses – all we can do is find ways to accommodate and improve his quality of life.

  • Adam T-H

    I wouldn’t be surprised if that was a Very deliberate choice on behalf of the producers. Invisible illnesses and disabilities are easier to discount.

  • KGTN

    I haven’t watched the series, but I was curious about it. If it’s painting a hypochondriac narrative like you say, that’s awful. While my body is healthy now, I’ve had a lot of random auto-immune symptoms in the past, but the results were inconclusive. I’ve felt at times even the doctors didn’t believe me.

    I used to have GI issues pretty bad. After being dismissed by my GI because he couldn’t immediately figure out what was going on, I requested a colonoscopy. I was told afterwards nothing was abnormal, only to have them call two weeks later to say they found I had a rare form of microscopic colitis. All the doctor said was, “This is chronic, and there’s not much we can do. You’re young, so I’m not sure why this is happening.” He put me on very strong steroids, gave me no medication instructions, and forgot about me. After having a bad reaction to the medicine, his office brushed me off and then refused to respond. That medicine eventually depleted my immune system so much that I caught the mumps (even though I’d been vaccinated).

    I also had other flare-ups that reminded me of Lupus (which runs in my family). I started seeing a Rheumatologist, but since my blood tests were inconclusive, the doctor didn’t seem to think it was a big deal. It’s tough diagnosing Lupus and other auto-immune disorders. If tests are inconclusive, there’s not much doctors can do except tell you to “keep an eye on it” and come back in six months.

    Thankfully, things have settled down since then. I feel a bit healthier now. However, it’s left me a little wary of medical professionals. I’m definitely not anti-medicine, but I think there needs to be some culture changes in the way doctors interact with their patients. They’re told by lawyers not to admit guilt. They’re even afraid to admit when they don’t know something. It leads many doctors to doubt their patients or give improper treatment.

  • taylor_serenil

    Reality is, a LOT of people are dealing with chronic stuff of one sort or another, and even the ones with good insurance whose doctors/medical pros actually believe them and are trying to treat their stuff appropriately just get to hit a (slightly) “easier” button. Most chronic stuff by definition IS NOT CURABLE. (You may be able to knock it into remission, but that doesn’t mean you’ve actually cured it).

    Me: bipolar II, probably autistic but there’s no real resources plus confounding factors so no diagnosis, TBI that left me with stress and medication-triggered tremors (probably why I’m on SSDI and can’t tolerate most meds used for bipolar treatment), chronic pain that they aren’t 100% sure where all of it’s coming from yet, polycystic kidney disease, allergies, etc.

    So yeah, if you’re going to have a show about people with ongoing conditions, be informative at least? (Also, yes, I would totally believe that they cherry-picked invisible stuff. Most days if you just *look* at me I look “healthy”. You *talk* to me for more than about 2 minutes and you’re probably going to pick up “neurodivergent of *some* sort but channeling it into conversational topic”, but the participants were probably scripted.)