American Breakdown: Jennifer Lunden

Welcome to the Chemical Sensitivity Podcast.

I'm Aaron Goodman, host and creator of the show.

I'm a longtime journalist, documentary maker, university instructor, and communications studies researcher.

I also live with Multiple Chemical Sensitivity or MCS.

MCS is also known as Chemical Intolerance and Toxicant-Induced Loss of Tolerance or TILT.

The illness affects millions around the world — and the number of people with MCS is rising just about everywhere.

Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more. 

Trace amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants and a lot more can spark a cascade of debilitating symptoms.

Finding accommodations can be very complicated.

Dismissed by healthcare providers, employers, and even loved ones - many feel misunderstood, isolated, and invisible. 

This podcast aims to change that.

We delve into the latest research and speak with all kinds of people impacted by MCS.

You’ll gain important knowledge, a sense of validation, and learn about navigating the reality of MCS. 

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In this episode, I’m speaking with author and activist Jennifer Lunden, who goes by her last name, Lunden. 

Lunden is the author of “American Breakdown: Our Ailing Nation, My Body's Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life.” 

We reached Lunded in Portland, Maine on the east coast of the U.S.

We talk about her lived experience with MCS and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), how many folks with both illnesses are misdiagnosed by medical professionals, the strength it takes to cope with MCS, and more.

This is the first time on the podcast that I talk with someone about brain retraining, which as you know, raises all kinds of questions, and many people have different views about it. 

Nothing on this podcast is intended to be construed as medical advice.   

This episode contains a discussion of Medical Assistance in Dying or MAID and suicide, and some may find this upsetting or triggering. Please contact a suicide crisis helpline where you live for confidential support and assistance if needed.

The Chemical Sensitivity Podcast and its associated website are the work of me, Aaron Goodman, and made possible with funds from the Marilyn Brachman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists and the public about Multiple Chemical Sensitivity. The content opinions, findings, statements and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of sponsors.

Thanks so much for listening.

[00:00:00] Aaron Goodman: London, thank you so much for joining me on the podcast.

[00:00:03] Lunden: Happy to be here, Aaron. Thanks for having me. 

[00:00:05] Aaron Goodman: Before we dive into our conversation, would you be willing to share a little bit about yourself, the motivation for writing the book and the illnesses that you have lived with?

[00:00:19] Lunden: Yeah, so I moved to Maine from Canada. I grew up in Peterborough, Ontario, and I moved here in 1989 to start my adult life. My parents are both American. I was born in the US, but grew up in Canada. So I was able to live anywhere I wanted, and I moved to Maine and I was so thrilled. And it was very stressful to start an adult life in a new city where I didn't know anybody.

[00:00:45] Lunden: And I came down with a case of mononucleosis. And I had to quit my job and I ended up having to go on welfare and it didn't go away. And the first doctor that I had told me I was just depressed and the best thing for me would be to get back to work but ultimately I was able to get a diagnosis of what we now call ME/CFS, Myalgic Encephalomyelitis slash Chronic Fatigue Syndrome at least here in the U. S. So I got that diagnosis and I had been sick for about five or six years when I stumbled upon a biography of Alice James, who was the sister of the writer, Henry James, and the psychologist William James. 

[00:01:28] Lunden: And I already knew that Alice had spent most of her life bedridden. , so I felt a sort of curious sisterhood with her and bought the book. And it changed my life because I felt like I really had found my illness sister.

[00:01:44] Lunden: And I got very curious. Her illness was called neurasthenia. And it was an illness that many people had in the 19th century. And I just began to wonder if our illnesses were actually the same thing. 

[00:02:00] Lunden: And then meanwhile I also began developing chemical sensitivities. And came to know that had a name called multiple chemical sensitivity. If I was exposed to even things like perfume or scented hand soap or air fresheners are the worst or fresh paint those things would give me A headache that no pain reliever would relieve. And it felt like my brain swelled up in my head. And I'm sure many of your listeners already know that feeling. And then the brain fog. Which made it really difficult to hold many thoughts at the same time. And, think clearly. 

[00:02:39] Lunden: And so when I was researching the book, I was looking for connections between my illnesses and Alice's and between what's happening now and what was happening in the 19th century, and that ultimately led me to understand and contextualize my research as the health hazards of industrial capitalism, anytime that any country is, has capitalism as the foundation of its economics, it means that people come second. And it means our health comes second or third, or I don't even know.

[00:03:20] Aaron Goodman: Do you want to take us back to? To, the first time you reacted to chemicals, synthetic fragrance.

[00:03:27] Lunden: Yeah. Like the one that I remember, and I don't think it was the first one, but I remember being at a friend's house and washing my hands with soft soap. And it was apricot honeydew or whatever the kind of name they give those things to make it sound like it's natural.

[00:03:43] Lunden: And I washed my hands and then I started getting a headache and I couldn't figure out what was Why? By then I already knew, that I would get headaches from some chemicals. I hadn't been dealing with it for very long, and I didn't know how widespread it would be, and I certainly didn't expect it to happen from a hand soap.

[00:03:59] Lunden: Then I went and tried to wash it off. There are chemicals in fragrance products that are actually designed to help keep them in our skin. And so I couldn't wash it off. And I just had to live with a headache for the day.

[00:04:13] Aaron Goodman: Yeah. So that's something that I think a lot of people can relate to and we're surrounded by these chemicals and it's really hard to get away from them on a daily basis for many of us. I want to perhaps invite you to read, page 91 and 92, where you talk about the minefield of chemicals that you found yourself living in.

[00:04:32] Lunden: I'd love to. So this chapter is called Minefield, and it begins with And then something new. Headaches. They came when the waitress sprayed detergent on the table next to mine, when I entered a public bathroom that reeked of air freshener, when I rode in a car with a hole in the exhaust. They came when someone wearing perfume sat down next to me at the movie theater, or a reading, or a concert.

[00:05:00] Lunden: When I breathed in the cloying chemical sweetness of lit, scented candles at the podiatrist's office and the potpourri on display at the department store. They came at the tire store and on airplanes. When I passed through the pesticide aisle at the hardware store and the laundry aisle at the supermarket.

[00:05:19] Lunden: They came when I stayed at hotels that had just installed new carpet or laid down a fresh coat of paint. They came when I was exposed to the fumes from the toner in my printer and the chemicals off gassing from my new TV or even a new pair of shoes. They came from the fabric softener I couldn't scrub out of the jeans I bought from the consignment store and the perfume I couldn't get out of the shirts.

[00:05:43] Lunden: The world became a minefield. Before I fell ill, headaches were a rarity and easily relieved with a couple of aspirin. But these new headaches were something different. They started behind my eyes. A pressure, subtle at first. Soon, though, it felt as though my entire brain was pressing against my skull. A fog rolled in, my capacity to juggle a number of thoughts at once, an ability I had taken for granted.

[00:06:12] Lunden: Dwindled. Everything closed in. The pain was dull, grinding, relentless. Tylenol didn't touch it. Advil didn't touch it. Hydrocodone didn't touch it. I was helpless to repulse this pain, the lymph nodes in my neck swelled up, my throat got raw and sore. The only thing that stopped the onslaught was separating myself from the offending agent, or it from me. 

[00:06:39] Aaron Goodman: At that time when you first developed multiple chemical sensitivity, can you talk about how you dealt with that? Whether you sought out medical help and what kind of responses you got from medical professionals? 

[00:06:58] Lunden: First of all, I want to say that the pediatrician I had in Canada was such a wonderful doctor and I had him all my life. And then I moved to Maine and didn't have a doctor and that first doctor that I got was the one who was dismissive, traumatizingly for me when I was so sick. But because of that experience, I vowed never to put myself in that kind of position again. I did find several different kinds of support groups including one for people with ME CFS and later I found another one for people with multiple chemical sensitivity and through those, I was able to hear about doctors that were trustworthy and I wound up seeing a doctor Joe Pye, who is in the book and he specialized in environmental medicine.

[00:07:48] Lunden: And so I think I actually might've been seeing him before I started developing chemical sensitivities but his whole intake form included things like what industries were in the City where you grew up really looking at what chemicals might you've been exposed to? 

[00:08:08] Lunden: Well, I was in Belize right before I came to Maine and, DDT has been banned in the U S and in Canada, but they just send the DDT now to the countries that haven't banned it. And Belize was one of them. So if you have roaches in your house, you use DDT to get rid of them. So I would have been exposed to that when I was there. 

[00:08:28] Lunden: So anyway he was wonderful at taking seriously that these chemical exposures were influencing my health and he would try lots of things and I went on a really strict diet and we tried things like vitamin B injections. When you get this sick, you will try just about. anything to get better. At least I did because I wanted so desperately to get better and I was determined. And some things might help a little bit, but ultimately nothing was like the final answer.

 I Had a therapist. Therapy is not going to cure ECFS or MCS but it can be really helpful in dealing with the stresses of having these illnesses and the stresses of living with disability and the stresses of living with a disability that's so dismissed by our culture. 

[00:09:22] Aaron Goodman: One of the really compelling parts of the book, is the parallel you make between how many people with ME CFS and multiple chemical sensitivity are dismissed by doctors, medical professionals, and misdiagnosed, told that the reason for these illnesses is a psychiatric or psychological condition.

[00:09:46] Aaron Goodman: You write that ME/CFS strikes as much as four times more women than men. And we know with MCS, also more women than men have the condition. And many are sent to psychiatrists. Many were told that their illnesses were yuppie diseases.

[00:10:06] Aaron Goodman: You talk about a 2006 study by a psychiatrist named Simon Wesley, who wrote about ME CFS, quote, the diagnosis elicits the belief the patient has a serious disease and it becomes a self fulfilling cure. prophecy. Diagnosis leads to transgression into the sick role. The act of becoming a patient, even if the complaints do not call for it.

[00:10:33] Aaron Goodman: The development of an illness identity and the experience of victimization. In the book doing harm by Maya Dusenberry, who's been on the podcast. She quoted a study that said that even as late as the year 2000 when people are misdiagnosed as having psychiatric illnesses, mental health professionals are often the first to make a correct diagnosis of autoimmune disease.

[00:11:07] Aaron Goodman: And you quote a study that says that 75 percent of people with ME CFS were misdiagnosed as psychological cases by one or more of their doctors. So we know that this happens for folks with ME CFS. and MCS. Do you want to talk a little bit about how you see this? 

[00:11:30] Lunden: It's years that it takes for people with these illnesses to get an accurate diagnosis.

[00:11:36] Lunden: First of all, they're misdiagnosed, which is a pretty serious problem when you just call it that. It's a misdiagnosis. But second of all, they're living with the misdiagnosis. They're not, maybe not able to access Things like social security that can help them live without having to work so that they can try to get their health back.

[00:11:57] Lunden: They don't have that validation from society. And so maybe their partners don't believe them. And so it caused strife within the relationship. Maybe they can't get accommodations at work since they don't have an official disability, according to a doctor. 

[00:12:15] Lunden: And I just want to say that about 50 percent of people who have long COVID also qualify for the criteria of ME/CFS. And I have a friend who developed long COVID. Her doctor ultimately refused to sign the paperwork so she could continue getting disability through her job and she had to go back to work full time and she still has to work full time. And because she's working she can't get better. 

[00:12:43] Lunden: And so there's a tremendous amount of power that doctors hold and when they're misinformed and biased in part by their training, which in my opinion a little behind the times in science and one of the studies that I read found that It takes something like 17 years or 19 years For medical research to actually Hit the ground and be used by the doctors who are out there with patients.

[00:13:11] Lunden: And so it's a serious problem. And not to mention the feelings of shame that, that patients have. And some of us are pretty strong, and we know something's wrong, and we just know that doctors don't have it right. But I've read essays and books by women who were told they weren't sick, and they really thought they were crazy. They thought they were crazy. Which isn't healthy because they weren't crazy. They were sick. 

[00:13:44] Aaron Goodman: Yeah, no, I get it. And I just like to ask you a little bit more about this theme of the role and influence of doctors in Western society, and you write about um, A 1951 theory developed by a person named Talcott Parson, who writes about the theory of the sick role. Quote, as unproductive members of society, the ill entered a role of sanctioned deviance that, that disturbed the social function of society.

[00:14:15] Aaron Goodman: Is it your view building on how you understand this theory that people who have ME/CFS or MCS and other chronic illnesses are seen as deviants and we're meant to be under the control of a doctor rather than working with medical professionals as more of a partnership? 

[00:14:38] Lunden: Yeah, so that, that idea of the sick role, which was developed so long ago, still has conscious and subconscious effect on healthcare providers and members of our culture, especially because we're in a capitalist culture.

[00:14:56] Lunden: Our value as humans is viewed through what we can produce and what we can do to make the culture continue to grow economically. That's how our value is seen. And it's interesting just hearing you read the quote, could you read it again, just that line about the sanctioned deviance, just that one sentence?

[00:15:16] Aaron Goodman: As unproductive members of society, the ill entered a role of, quote, sanctioned deviance, that disturbed the social function of society. 

[00:15:29] Lunden: I love it because so this sanctioned deviance and deviance is such like a bad word, like we're not supposed to be deviant.

[00:15:35] Lunden: I have two feelings. One is no, I don't want to be viewed as deviant by the powers that be because that makes me an outsider who has no power and no value in my culture. But there's this other piece that disturbed the role of of society. The subtitle of the book is, so it's “American Breakdown, Our Ailing Nation, My Body's Revolt, and the 19th Century Woman who Brought me Back to Life.”

[00:16:02] Lunden: And I used that word revolt. It did feel like my body revolted against me, and my own will, and my own desires. But it also revolted against this capitalist idea that my only value was based on what I can produce to help the society grow economically. 

[00:16:22] Aaron Goodman: You also talked about how many of us are not able to get a diagnosis and how challenging that can be. In your book, you write about a moment when you told your mother that your will to live had subsided and your mother responded in quite a remarkable way. Would you like to talk a little bit about that? 

[00:16:45] Lunden: Yeah, I think it's really important because to have an illness like this and not have periods of suicide, it seems very unusual. I was a therapist for 15 years. And so it gives me some extra expertise on this as well.

[00:17:01] Lunden: It's important for people to have a place where they can talk about suicidal feelings particularly because if we can't talk about them then they can take over in a way, then they have more power than they need to have. It's natural to be suicidal when your whole life gets sidelined, and particularly when you don't know if you're going to get better.

[00:17:24] Lunden: So I would say it's natural to feel suicidal, but I would also say, thank God, I never followed through. I never even attempted, because I I just always felt hope, sometimes not very much. I was depressed for the better part of the first decade that I was sick. I have, a genetic predisposition to depression, so I was depressed twice as a teenager before I was ever sick.

[00:17:53] Lunden: And I used antidepressants during that time, and they would work for a while, and then they wouldn't work. So really, even despite the use of antidepressants and all the other things I was doing for my health it's just depressing when you're that sick and you can't live the life you want to live.

[00:18:08] Lunden: And Alice also experienced at least one time when she was seriously contemplating suicide and she talked with her father her father said basically, Given everything you've been going through you, you have full right to end your life. And, in some ways that sounds awful, but Alice felt a great sense of relief. And she didn't do it. So it was like, somehow like, giving her permission reduced attention. 

[00:18:42] Lunden: A lot of people, when they feel suicidal, what they really want isn't for their life to end. They want their suffering to end, and they can't find a way. They don't know how, or if it will. 

[00:18:53] Lunden: And then in my case my mother had a similar response to Alice's father. Which was, like I accept whatever you choose to do. And I felt the same thing that Alice did. I just felt relief. I felt heard. And I also knew that I didn't want to end my life. I just wanted to be out of the suffering and Instead, I just hung on. I think I might have gone back on an antidepressant and that sort of got me through and I believe in the right to die, but you can't know how, what's going to happen. I, my life got so much better. I never could have fathomed how good my life would be. The times that I've known of people with these illnesses that have ended their lives, I felt so sad because they didn't Feel like they had any way out and we don't know what could have happened for them.

[00:19:49] Aaron Goodman: I'd love to talk with you about how your life got better. But before that, I wasn't expecting to talk about this or ask you about this, but since we're there, do you want to talk a little bit about medical assistance and dying made? 

[00:20:08] Lunden: I know that people with disabilities activists with disabilities have some very strong feelings about assisted suicide and I hadn't even considered or known that people with MCS are sometimes going that route in Canada. And I'll just say that my first response is sadness because because I still have belief and hope that there, that relief is available. And it's not my choice. It's not my choice to choose whether this person who's dealing with these illnesses does it or doesn't do it. I just hope that we're supporting people as well as we could be to maybe find some ways to get relief. 

[00:20:59] Aaron Goodman: Thank you so much for sharing. I would just say that I think it's, it could probably be difficult for people to access that option in Canada, just because of the widespread dismissal by doctors of AIDS.

[00:21:15] Aaron Goodman: folks with MCS. I feel a lot of empathy for people who you mentioned who leave cities and urban environments. And I'm actually going to be speaking with someone on the podcast who goes by the name on Instagram canary involuntary who has lived in very isolated circumstances.

[00:21:35] Aaron Goodman: Going through, living through harsh winters in New England, the United States because severe reactions to just about everything, what we call universal reactor. So I'll be interested in speaking with her about that and just learning more about the Fortitude it takes to continue to do that.

[00:21:55] Lunden: Like it takes a tremendous amount of fortitude to do what those people are doing and to even day to day and manage being in the world or on the edge of the world.

[00:22:05] Lunden: Oh, 

[00:22:06] Aaron Goodman: absolutely. You did talk about how things have shifted for you. Do you want to talk a little bit about that? 

[00:22:15] Lunden: Amidst all the many, many, many treatments that I tried that didn't really do much or provided maybe a little relief, but not full recovery, Several years ago, I heard about brain retraining.

[00:22:27] Lunden: I heard first about Dynamic Neural Retraining System, DNRS, which was developed by Annie Hopper in Vancouver. And then later I learned about the GUPTA program which was developed by Ashok Gupta in London. And GUPTA had ME CFS, Annie Hopper had MCS.

[00:22:45] Lunden: The fact that both of them had these illnesses made me more trusting of their ideas. 

[00:22:53] Lunden: And both of those programs were developed to very systematically retrain the brain so that it doesn't go into fight or flight in the times when somebody might be triggered worried that they're going to get uh, Tired by doing something or worried that the smell of somebody's perfume is going to give them a headache.

[00:23:16] Lunden: Now, I'm going to interrupt myself right here because I have never talked about this in an interview because it is way too easily misunderstood. as somebody saying you just need to think differently and or 

[00:23:31] Aaron Goodman: Does it open up the opportunity for medical professionals to say, yeah, we're right. is an anxiety disorder. And some researchers have in the last few years published a paper claiming that MCS is a panic disorder.

[00:23:50] Aaron Goodman: Is there a risk by talking about the over-inflamed reaction or hypersensitivity of the amygdala, the limbic system that we are supporting the argument that MCS is an anxiety or panic disorder. 

[00:24:06] Lunden: Well, And the idea that it's all in our head, which is the very thing we've been fighting against for so long.

[00:24:12] Lunden: When I started writing the book, I was really trying to get better and I was really hoping that by the time I'd finished, I would have found the magic bullet, the biological thing that vindicates us all. And instead what happened was, I was desperate. I found, I learned about this treatment that people were saying was curing them.

[00:24:29] Lunden: I did the program, which is very specifically and research based designed for people with these illnesses. And I, people do need to be careful not to just go with any brain retraining program. They need to choose ones that are designed for people with these kinds of illnesses.

[00:24:46] Lunden: And I did it within two weeks, I was starting to have fewer reactions to chemicals. And I, the first thing I found was I was able to use the hand soap at my workplace, which I had never been able to use. And after I kept doing it for a year and a half, the program said do it for six months, but I was not doing an hour a day, I was doing half an hour.

[00:25:09] Lunden: And at that time I had a full recovery. Now I would say I had full remission. And I was pretty convinced this is a huge like, I was cured it was a miracle. And I was able to travel and live my life fully and not worry about chemicals and not worry about fatigue. And then, three years in, I was under a lot of pressure with the deadline on my book. I got a cold. The symptoms didn't go away the way they should've. And I relapsed, and I wasn't too worried at first because I knew what I needed to do with the brain retraining. But I thought I'd be over it in a couple of months, but for me that wasn't the case. It was like, seven months, and I'm still not fully back.

[00:25:57] Lunden: I'm not as chemically sensitive as I was and my energy is pretty good right now. But I'm not fully back. 

[00:26:04] Lunden: Some people don't get a hundred percent better, but they do see improvement to me that that was the most helpful thing that I did. And I am so grateful for that. We in, in these communities are so hypersensitive to being told it's all in our head and to all the kinds of societal oppression and subjugation that happened as a result of that, that it does feel fraught to talk about brain retraining, but it's something that worked for me and works for others.

[00:26:34] Lunden: I want to say very clearly. It's. Not going to work for everybody, just like a cancer treatment that works for a lot of people isn't going to work for everybody. And it's not a simple, easy thing. It's not a matter of just changing our minds and It can be helpful. 

[00:26:51] Aaron Goodman: I really appreciate the nuanced sharing around us. 

[00:26:56] Lunden: would like to interrupt more just to say the reason I don't talk about it. I haven't until this moment talked about it on a podcast or any event is because it's too hard to get. In the book, I really build up, I talk about psycho neuro immunology. My belief is that all illness is bio psycho social.

[00:27:16] Lunden: Bio psycho social is another term that we, who, in these communities are hypersensitive to, with good reason, because they've been used against us. The term biopsychosocial has been used by some of those in positions of power in the medical world to mean psychosocial but in my mind, what happens out in the world and the stresses that we face in our bodies can create the conditions combined with our genetics for all kinds of illnesses, from the common cold to heart disease to multiple chemical sensitivity and chronic fatigue syndrome. 

[00:27:53] Aaron Goodman: You talk about the lack of research that has been conducted or funded with relation to me CFS. And I think we can extend that to include MCS. And you write that CFS has devastated the lives as many as 2. 5 million Americans. And you compare the amount of funding for cancer research and HIV AIDS research and you write, what might've happened if MECFS, and we can perhaps include MCS, had actually received its fair share of funding, how many answers might have been discovered? What biomarkers? How many treatments? I recognize this question topic comes on the heels of our, your, our chat about brain retraining. And that the follow up question is really about, how severe, how much of a hazard are the chemicals that we're exposed to, right? 

[00:28:54] Aaron Goodman: Cause you talk about Taron Randolph, who was an early researcher, proponent of environmental medicine, and he called it a petrochemical problem, right? He developed a new branch of medicine called clinical ecology, which then led to environmental medicine and his core argument, if I understand it, was that these chemicals petro base chemicals are very harmful to us. So those are two connected questions, again recognizing that they come after our chat about brain retraining. Yes. 

[00:29:27] Lunden: Which is great because one, so I did brain retraining a long time ago and one of the things that Annie Hopper says early on in one of those DVDs is, despite everything that she's saying about brain retraining in the limbic system, it doesn't mean that these chemicals aren't a problem. 

[00:29:48] Lunden: I know from the research that I did for my book that we are not adequately protected by the government from the chemicals that we use in our everyday products, and that all of us are better off using natural products as much as possible. 

[00:30:04] Lunden: And while I see brain retraining as a valid treatment for multiple chemical sensitivity and ME/CFS, that doesn't change that we are exposed to too many chemicals. And too many chemicals that aren't safe for us, and we have no idea the effects of that chemical soup that we're being exposed to every day.That was Jennifer Lunden, author of “American Breakdown: Our Ailing Nation, My Body's Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life.” 

You’ve been listening to The Chemical Sensitivity Podcast. I’m the host and podcast creator, Aaron Goodman. 

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