Afflicted on Netflix is hurting everyone — not only the chronically ill

When Netflix released Afflicted last weekend, a docuseries portraying people with misunderstood, chronic health conditions, I binge watched the entire 6 hours.

The series depicted the lives of:

Carmen, who has electromagnetic hypersensitivity (EHS).
Bekah, who has a severe sensitivity to mould, Lyme disease, and chemical sensitivities.
Jamison, who has myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome (CFS).
Pilar, who has multiple chemical sensitivity (MCS).
Star, who has numerous autoimmune diseases, dystonia, trigeminal neuralgia, chronic Epstein-Barr virus, and a possible infection with Lyme disease.
Jake, who has various things going wrong in his body, including high levels of antibodies for the Epstein-Barr virus (mononucleosis) and a possible infection with Lyme disease.
Jill, who also has MCS, mould and metal toxicity, electromagnetic hypersensitivity, Hashimoto’s, and mitochondrial dysfunction.

After seeing the trailer, I hoped it might be a groundbreaking documentary that would educate potentially tens of millions of Netflix subscribers about a group of illnesses that desperately need media attention. Instead, it was a horrible representation of the chronically ill that portrayed these seven participants as hypochondriacs who are out of touch with reality.

I would summarize the obviously biased message the film sent its audience with one phrase, spoken in the film by Dr. Friedman: “You can be deluded that you’re sick”.

Afflicted has angered a lot of people and for good reasons. As a result of the documentary, the #Afflicted hashtag on Twitter and discussions on Reddit are full of derogatory and even bullying comments aimed at people living with chronic illness, especially those featured in the series.

Yes, I know, it’s social media and haters gonna hate and what other people think doesn’t matter, right?

Actually, it matters a lot.

In fact, what others think about us can mean the difference between stopping or worsening a growing health crisis.

Yes, I said us. You see, I am a person with multiple chemical sensitivities.

I also have a sensitivity to mould and very mild electromagnetic hypersensitivities. It is quite common to see overlap between these conditions. Many years ago, I was also diagnosed with ME/CFS, however, in my case, I was able to regain my life by avoiding chemicals and mould. For that reason, this post is going to focus mostly on chemical sensitivities because it has had the biggest impact on my life and it’s the one I know the most about.

In Afflicted, MCS is described as a ‘rare’ condition, which is wildly inaccurate.

In the US, a disease is considered rare if it affects fewer than 200,000 Americans (about 0.1%). According to a recent study, about 12.1% of Americans have mild sensitivities to chemicals, including perfumes, and 3.1% are diagnosed as having MCS or environmental sensitivities.

US Population: 325,700,000
3.1%: 9,771,000
12.1%: 39,409,700

IT’S NOT RARE!

Another recent study showed that among the population, 12.8% report medically diagnosed MCS and 25.9% report chemical sensitivity. Milder sensitivities have tripled.

TRIPLED.

the existing evidence does suggest that chemical sensitivity is on the rise and could become a large problem with significant economic consequences related to the disablement of productive members of society

Calculate 12.8% of the populations of Canada, the United States, Australia, Europe, and other industrialized countries and you get tens of millions of people. 25.9% means 1 person in 4 experiences headaches, migraines, or respiratory issues when they come in contact with fragranced products.

For comparison, the H1N1 (swine flu) outbreak, considered a pandemic, affected 19.9% of the population.

H1N1 was all over the news. MCS is not.

MCS is rarely in the media and Netflix had a prime opportunity to educate people with real research and real data.

Instead, the message that “you can be deluded that you’re sick” reinforces the common misperception that those of us with chemical sensitivities are inventing a problem. And by implication, that chemicals are safe, which is a dangerous message to spread.

Fragrances are made from harmful chemicals and many are known to cause cancer, create endocrine issues, and even mutate genes. Building materials, glues, cleaning agents, furniture, mattresses, and even kids’ pijamas contain harmful chemicals. Over 80,000 other synthetic, potentially toxic ingredients can be found almost everywhere. If you want a more accurate documentary on this subject, watch Stink.

Which sounds more delusional, A or B:

A) 80,000 new, mostly untested, and man-made chemicals — found in household cleaning products, personal care products, pesticides, and building materials, have been introduced into our modern way of life over the last century. They are found in our air, in our water, in our food, on our skin, in the clothing we wear, in the beds we sleep on, and in the products we use every day. Some of them have been proven to cause serious and fatal health problems. Now, tens of millions of people worldwide are increasingly becoming sensitized to these chemicals.

B) Millions of people worldwide are inventing the same group of symptoms due to emotional problems, mental health issues, and a need for attention.

Very few of us were born with sensitivities. Most of us developed them at some point in our lives either due to an acute exposure or an accumulation through repeated exposures. There may be a genetic component, but proper research is lacking, so we don’t know for sure who is susceptible to becoming sensitized. But if the prevalence of sensitivities has risen, the glaringly obvious conclusion is that being exposed to chemicals puts everyone’s health at risk.

If people believe that our symptoms stem from emotional issues, they will continue to use the same products, thinking the problem lies with us, not with the chemicals. They will continue to put themselves at risk and the problem will continue to worsen.

Avoidance is the only cure I know.

Synthetic perfume, including air fresheners, dryer sheets, laundry detergent, shampoo, chemical cleaners, and even antiperspirant cause me to feel weak, nauseous, confused, and give me intense migraines. Within seconds of being exposed to pesticides, my face goes numb as though I’ve been given a shot of novocaine, my legs give out and I can’t speak properly. When I’m really bad, a severe reaction causes me to have convulsions (something like a seizure) and I become paralyzed for about an hour. This is then followed by hours of intense pain and something resembling a hangover.

If I am constantly surrounded by chemicals in my day-to-day life, I very quickly become bed bound, unable to care for myself.

The only way I have been able to avoid being disabled is to live in an isolated oasis in the country, with clean forest air, fresh water, and strict control of what I allow into my home. We call this way of life ‘avoidance’.

Avoidance has allowed me to recover enough to go from being bedridden, crawling on my hands and knees to the bathroom, to working full time, going hiking, and living a full life. The evidence in my own life is obvious. With avoidance, I am well. Exposed, I am sick.

I am very fortunate to be able to work remotely at my dream job from my safe oasis at home. However, as soon as I leave to go grocery shopping, go to the gym, attend tech conferences, take public transit, or even enter a hospital, it’s nearly impossible to avoid chemicals that can trigger a reaction.

How do you practice avoidance in a world where chemicals are everywhere?

This is the respirator I wear when entering public places

Our ability to participate in the world is directly affected by the opinion of others.

To put it simply, those of us with chemical sensitivities are at the mercy of everyone else who uses products that contain fragrances and harmful chemicals. If the public opinion is that chemicals are safe and that MCS is all in our heads, people will never have a reason to choose to use products that don’t contain them.

There are thousands of people who have had to stop working because their work environment contains fragrances, even if none of their co-workers or customers have applied perfume. They may have washed their clothes with fabric softener that contains fragrance, or used a fragranced shampoo, or used toxic dryer sheets, or applied hand lotion that contains fragrance.

Here in Canada, the Canadian Human Rights Commission recognizes environmental sensitivities as a disability and states that we are entitled to the protection of the Canadian Human Rights Act, which means that employers and service providers have a duty to accommodate.

Despite this, it is incredibly difficult to get proper accommodation. Many well-meaning people believe that we have some form of emotional problem or a psychosomatic illness. That it’s all in our mind. They don’t realize that we’re asking them to stop using a harmful product that is physically disabling us.

Publications exist that dispel the idea that MCS is psychosomatic, but the docuseries Afflicted included none of them.

It included nothing from doctors like Dr. Molot, Dr. Rea, and Dr. Steinemann, who specialize in environmental medicine, including electromagnetic hypersensitivity and mould sensitivity.

Very few of the respondents (1.4%) had a history of mental or emotional problems prior to the onset of their hypersensitivity, even though over one-third (37.7%) experienced some emotional troubles after their hypersensitivity manifested. These results are relevant to the question of etiology and tend to support Miller and Mitzel’s conclusion (Miller and Mitzel 1995) that MCS is inconsistent with somatoform disorders. The difference between the presymptom and postsymptom findings weakens the notion that MCS is psychogenic, or that a chemical hypersensitivity is a product of emotional disturbance.

It doesn’t stop with sensitivities.

There is evidence that endocrine-disrupting chemicals (EDCs) play a role in several other health issues. Many chemicals are known to cause cancer and some types of cancer have also increased. There is enough evidence to warrant a lot more research than is already being done.

If you map the increase of certain diseases against the increase of exposure to toxic chemicals, there’s a pretty good match there.

For as long as people believe that chemicals are safe, they will continue using products that could be causing chronic, expensive, sometimes debilitating, sometimes fatal health issues.

The most accurate statement, in my opinion, from Afflicted was made by Dr. Richard Horowitz, MD: “No one’s willing to take a look at what’s right under your noses”.


EDIT — The participants of Afflicted have told their true stories.