Jill

I want to say to Afflicted, I trusted you with my heart and my story and now you are using it against me and my people.

I was told that Afflicted was going to be a serious documentary. With science, interviews with experts. I imagined it would be like educational programming on PBS — graphs, interesting animations, respected, cutting edge scientists and doctors across specialties as well as alternative practitioners. Patients telling and showing their stories truthfully and fully. Thoughtful questions, a review of literature. Scholarly and academic but also alive, beautifully assembled and inspiring.

This appealed to me because Multiple Chemical Sensitivity (MCS) is an unusual and complex problem, and I had it. I thought, the makers will handle this with integrity. Here is my chance to show the world that chemical sensitivity is real. I thought, I’m a credible person. I’m a 51 year old professional with a successful private psychotherapy practice in New York. My partner Janine is a funny, articulate person and a successful, Emmy award winning TV editor. We have a fun, close and solid relationship. People will believe us.

Janine was nervous. As a TV editor, she knows what happens with footage. She worried that every part of our lives would be exposed, and that our lives would be upended. I wanted to do it — to help people — so she went along with me.

I told the Afflicted producer that my only concern, besides looking fat, was about anybody doubting my capacity to function as a therapist. She reassured me on numerous occasions. I figured, they will have my lab work. They are going to film conversations with my doctors, experts in the field. They would read books, consult scholarly articles, seek to learn about chemical sensitivity and mold toxicity. They would talk to my friends. They would talk to Janine. They would talk to me. They’d be genuinely curious. It would work.

I was wrong.

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 on. I am heartbroken and furious. I am being harassed, criticized and questioned. Several people on social media think that I should not be a practicing therapist. Others say that I am selfish and taking advantage of Janine. Someone named “Sarah” actually searched for and found our wedding Web site and posted this in our guest album.

We didn’t recognize the email address. Our Web site is now password protected. I shouldn’t blame the haters on social media, though, because Afflicted makes me look like a bad person. If I were them, I would hate me too.

But that is not who I am.

Who am I?

I am not a traditional therapist or a traditional person. I wear pearls with my Ramones t-shirt to work and hug my clients if they ask. I am earnest, irreverent and quirky, but I am not mentally ill or unstable. I suffer from invisible organic illnesses caused by our toxic modern world.

I am not a freeloader.

In order to amp up the drama and make it seem like I’m taking advantage of Janine, Afflicted implies — over and over — that Janine pays for everything. (She doesn’t.) It looks like she paid for 100% of the remediation and for my medical expenses. It looks like Janine is a lovestruck codependent idiot.

The truth is that Janine would have lost her house had I not paid for a large chunk of the remediation. The truth is that I pay for 100% of my medical expenses. The truth is that we had our house tested for mold — on the orders of my doctors. The tests found that it was teeming with extremely dangerous mold mycotoxins. Nobody would have been safe in this house.

In fact, Janine was sick and bedridden for more than a month in 2015, and nobody knew why. The previous owner had a mystery illness for over a year — and nobody knew why. In March of this year, Janine once again became ill. It seems like she had an adrenal crisis but once again, despite seeing specialists and other doctors, no one can figure out why. Her health is still fragile and she has not been able to return to work full time. Afflicted makes it look like Janine tore apart her dream house, with the beautiful dark wooden mantle and bookcases, for me. I went over the facts five hundred times with the producers. It’s a lie and they know it.

Why doesn’t Afflicted care about my health — our health status — as much as they care about our money status? We were prompted to discuss money issues repeatedly. We were fed dialogue that was chopped up in the edit and used to indict us. The house and our health issues have taken a massive toll on our financial life. But we participated in this series to spread the word about MCS, mold, and the health effects of environmental toxicity — not our financial woes.

Afflicted makes it look like we urgently needed $90,000 by winter. We didn’t. This number was an estimate of what it would cost to stitch up the house and repurchase all of our possessions, most of which could be replaced over time. Clothing, shoes, furniture, computers, electronics, kitchenware, art, appliances, cameras, books, booze, linens, window treatments, stuffed animals, luggage, air conditioning units, bric-a-brac, personal and professional documents, exercise equipment, collections of cool vintage things, rugs, records, tools, purses, lamps, hardware supplies, food, plants, jewelry…the mantle and the bookcases.

That $90,000 is meant to remind viewers that Janine is being fleeced by a selfish whiner who does little more than take vitamins, make her own hand-crafted suppositories, and drink afternoon cocktails with Leonard.

Afflicted makes it look like Dr. Nagy is hard selling me on a $30,000 treatment plan when in reality, she is suggesting (because I asked) that I prioritize having my amalgam fillings removed by a biological dentist. I have known folks with chemical sensitivity who say that it has been a game changer for them.

Three things about that. One, the number is wrong. Replacing each amalgam costs $125-$300. Dr. Nagy actually recommended that I go slowly, and start by removing amalgams in only one quadrant of my mouth, then see if there is any marked relief. Should it become clear that the more costly work makes sense, I would do that slowly, as well. Two, Dr. Nagy is not a dentist, so she has no financial stake. Three, the dental work conversation is about reducing electromagnetic hypersensitivity (EHS), the most hard-to-believe, mock-able medical problem in the series. In this way I am linked with Carmen, whose primary affliction is shown to be EHS, and set up to compete with her for Worst Person in Show.

I’m not a fucking hypochondriac. But I can see how you would think that I am.

Afflicted concocted a fictitious timeline. This matters because, had they not messed with the space-time continuum, they would have to present me as legitimately ill. By the time shooting for Afflicted began, I had been recovering for 10 months. I was still invisibly sick, often obviously sick, but making progress. Afflicted doesn’t show or tell about me at my sickest. I gave them videos and photographs. I told them how bad it was in the beginning, and for the first 6–9 months. Janine told them. Dr. Nagy probably told them. My friends told them in my casting videos. My lab work testifies. All of this was excluded.

Afflicted could have given extensive medical data about my very physical illness. I gave them medical records from at least 5 visits with 3 different doctors, including Drs. Nagy and Magaziner, who appear in the episodes. From Dr. Adrienne Sprouse, another physician with expertise in the treatment of mold, metal and chemical toxicity. They could have said something like, Jill was barely functioning in the fall of 2016, and now, look! She sees clients and friends! Here is what she did, and here is who told her to do it — and why!

There were reports that measure mold/mycotoxins, heavy metals and food sensitivities. Also, reports that document my diagnoses of Hashimoto’s, adrenal insufficiency, hypoxia, features of POTS and dysautonomia, and the MTHFR gene mutation that impedes detoxification. Not included. The only lab results you see for me in the series are heavy metals. All you are shown of my actual distress is me as a middle age Jewish lady who cries in front of supermarkets, is inconvenienced by ambient transportation odors on the New Jersey PATH train, is freaked out by an umbrella and yells at people who smoke on the street. To be clear, I would have yelled at that guy even before I became a fucking canary.

Being exposed to mold damaged my gut, circulatory system, tissues, my detoxification pathways, and my cell membranes and mitochondria, among other things. I don’t want to spend a lot of time on the science because I am not a scientist.

Afflicted was supposed to have legitimate experts and data like a real documentary. By now we know that the many other practitioners with expertise in chronic illness were interviewed and excluded from the series. Included was a random, gaslighting psychiatrist who insisted that those with chronic illness are hypochondriacs, mentally unstable, making it up. Maybe he used different language, but that is what he was implying.

Also, hearing Leonard say, “She’s here physically, but mentally…she’s somewhere else.” over sci-fi sound design and footage of me dancing and clowning around, and then eventually closing the door with a big creepy smile, was all carefully sculpted in the edit to make me look crazy. His reaction with the umbrella and me yelling at the smoker does this, too.

You know what’s sad about that besides everything? One of the ways I cope with feeling like crap day after day is to laugh and joke when I can, and have dance-offs with Janine. She is an amazing dancer. That is probably what is happening in the home video you see.

And you know what would have been nice? If Afflicted would have shown me walking into Dr. Nagy’s clinic — swinging a bottle of Prosecco wrapped up with a bow— and saying, Happy Anniversary! (It was a year, to the day, that I became ill.) Thank you for saving my life! That footage exists but they didn’t use it because it did not fit their false timeline and narrative.

I was Dr. Nagy’s patient from November 2016, a month and a half after the onset of my illness and nearly a year before that scene was shot. She did save my life. My heart rate was in the low 40s when I first saw her. I was unable to function. Showing this scene would have given Dr. Nagy the props she deserves for pulling me back from the edge. Instead, she shows up as a quack and a predator.

They also could have shown Dr. Nagy’s diplomas from University of Pennsylvania undergrad and Cornell Medical School. Instead, they chose only to show her certificate from the Academy of Environmental Medicine and various Martha’s Vineyard-themed trinkets. Why? To make her look unqualified and to the left of mainstream medicine.

Because they did not present me when I was horribly sick, viewers cannot appreciate my recovery and, therefore, the brilliance of my doctors, and the legitimacy of my obsessive, inflexible-seeming daily health regimen.

Here’s what I wonder. Why doesn’t Afflicted wonder about how lousy I feel most of the time? About how I can’t go to my beloved Afro-Caribbean dance class anymore because everybody’s grooming products and essential oils make me foggy and nauseous? About how I can’t go to Leonard’s house because the mold hits are so intense that I can’t spend more than 20 minutes inside before my spine starts to ache, my throat tightens, and my cells feel like they are filling up with black soot? How I am unable to shop for myself or go to parties without being sick for days? How I have to enforce a strict no-fragrance policy in my office, rigorously vet new clients, and how I had to lose several that chose their detergent fragrance over my care? Because it doesn’t fit Afflicted’s narrative that I am a freeloading hypochondriac nutbox.

And while I don’t want to dignify this concern of the Twittersphere, I would like to let people know that as long as I stay out of shitty scented supermarkets and box stores, like Ikea and Costco, before I see clients, I function well enough. (See: Winnicott — good enough mother.)

Aesthetically, Afflicted is sublime. The cinematography, editing and sound design are magnificent. But Afflicted misled me. My Afflicted sisters and brothers are being slammed. My partner and fiancé is being ridiculed. Rather than using me for good, it created a version of me that Janine could never love. Afflicted encourages doctors and mental health people to continue to regard the chronically ill with contempt. Progress has been made over recent decades; I fear and deeply regret that my participation in Afflicted may play a role in reversing it.

Given that indoor and outdoor pollution are getting worse all the time, more people will become afflicted with environmental illnesses. People with ME/CFS and Lyme will continue to die humiliating deaths because people like Richard Friedman will prescribe SSRIs and cognitive behavioral therapy instead of medications, supplements, IV infusions and other interventions to repair damage to multiple internal systems and organs.

I want to say to Afflicted, I trusted you with my heart and my story and now you are using it against me and my people.

There is a gun in our mouths and we will not stop screaming until you take it out.

_____________________

Want to contribute to my medical expenses? Click here.

Jill Maxi Edelstein is a psychotherapist and licensed clinical social worker in New York. She specializes in the treatment of acute and complex trauma, and focuses on creative issues, the concerns of gender nonconforming folks, those living with chronic illness, and things like depression, anxiety and life transitions. She has a blogs about her healing journey here, and has published things in Hopes&Fears (look under “Questions”), Beliefnet (“Take A Chant on Me” and “Jewish Soul in a Jazz Setting”), and Bunnyhop.

You can reach Jill on Twitter: @attunedtherapy and on Instagram at: afflictednj

You can help with her medical expenses by contributing to and passing around her GoFundMe campaign.

Read more true Afflicted stories here