Asking the Right Questions: An Interview with Alison Johnson UCLA Center for the Study of Women Science & Medicine A goal of the Chemical Entanglements blog is to tell stories that reveal how exposure is not something rare and exceptional, but something that happens to almost every person’s body every day, with a spectrum of different gendered health consequences. Some may experience consequences that aren’t immediately noticeable. But others may experience consequences that profoundly shape their lives. These can include long-term illnesses, with symptoms such as headache, pain, fatigue, weakness, anxiety, confusion, an inability to concentrate, and others. These symptoms can be triggered by exposure to chemicals present in the products that we use every day: cleaning products, cosmetics, flame retardants, and more. Some clinicians and sufferers call this condition Multiple Chemical Sensitivity (MCS). Alison Johnson developed MCS in the 1970s, and went on to become one of the most high-profile and active advocates for people with MCS. Johnson now advocates for fragrance-free workplaces. Johnson is also the author of several books, including three focused on MCS: Casualties of Progress: Personal Histories of the Chemically Sensitive, Gulf War Syndrome: Legacy of a Perfect War and Amputated Lives: Coping with Chemical Sensitivity. Johnson also produced three documentaries – Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, Gulf War Syndrome: Aftermath of a Toxic Battlefield and The Toxic Clouds of 9/11: A Looming Health Disaster. Johnson graduated from Carleton College at the head of her class, summa cum laude. She studied mathematics at the Sorbonne on a National Science Foundation Fellowship and received a master’s degree in mathematics from the University of Wisconsin, studying on a Woodrow Wilson Fellowship. She received a Distinguished Achievement Award from Carleton College in 2010 for her work in the field of chemical sensitivity. For more information, please see www.alisonjohnsonmcs.com and www.chemicalsensitivityfoundation.org. On July 16, 2016, UCLA Center for the Study of Women Graduate Student Researcher Jana Gowan had the pleasure of interviewing Alison Johnson at her home in Maine. Below is an edited excerpt from that interview. JG: Can you talk about how you first discovered MCS and what your first personal experiences with it were? AJ: As the years have gone by, I’ve begun to see that I had significant exposures long before I was aware of it. The first time it really began to impact my life was when we’d gone on a sabbatical to Paris for half a year in the spring of 1971. I now think that one of the big exposures I had that year that set me up was that we had a gas heater in the kitchen of the apartment we rented. And I just always remembered walking into that kitchen in the morning and there was such a smell of gas that I would throw open those wonderful French windows to let the fresh air in. Didn’t think too much about it. But of course, it was a gas cooking stove too we were using, and normally we always had electric stoves. A few months after we returned to the States, I had my first migraine at age 35. After this happened a couple more times, I suddenly realized that I would wake up with a migraine the morning after someone had smoked several cigarettes at an evening committee meeting in my kitchen. It was so lucky that I made the connection between cause and effect so soon. It’s been many decades since I’ve had a migraine. About a year later, I started getting the joint pains. It was very painful to try and brush my hair in the morning and when I went downstairs, my left knee really hurt. But by that point too, I was beginning to think a little in terms of cause and effect. So I asked myself, “What’s changed?” It was right about the first of October, and that’s when we always put the heating system on. And I thought, you know, that my joint pains could be connected to that. Then the next summer we were out in Colorado. And there was one of these hospital units where they could put you in a clean environment and introduce things one at a time. And I spent about ten days there. It was great because it really showed you the cause and effect of things. And so because of that, when we came home we switched our heating system. We’d had hot water radiators, and all we did was we got rid of the oil furnace in the basement and replaced it with an electric boiler. Now again, we put a lot of money into that. But, before that my joint pains were becoming quite a problem. Once we made that change, I never again had those joint problems. All this gardening I do, I’m up and down. For years I did long hikes in Rocky Mountain National Park. And I couldn’t have done those things if I hadn’t gotten rid of that furnace. Yes, you pay a lot more for heat with electricity, but good health is absolutely worth it. I learned to really think in terms of what could be causing something. I didn’t just think that things were inevitable…you know you’ve got some new health symptom, I didn’t think it was inevitable I would think that maybe there’s something that’s changed in my life. Before we got rid of the oil furnace and we had the oil tank taken out of the basement, I went down and stood by that oil tank just a minute, and I just started to feel so nauseated…that smell of heating fuel, which does bother a lot of people. JG: At the end of Casualties of Progress, you emphasized dedicated, chemical-free housing as the top priority for supporting people with MCS. Is that still your top priority, or has your thinking changed? AJ: After spinning my wheels for a couple of years thinking it was so essential to get housing I decided it wouldn’t happen. It’s way too expensive; it’s way too complex. And the people with MCS have different problems; you can’t put them all together. I mean people react to different things. Some people are far more sensitive. The liabilities are huge. And my feeling now is that, you’re better off staying close to what family and friends you have. And I, myself, have really changed, even in the last year or two, really changed my attitude about the research. I think we’ve gotten to a stage now with fragrance-free policies, where medical facilities, people are beginning to inch this way. It’s just like with smoking forty years ago. So I figure if people are already there, we’re rapidly getting past the point where we gotta prove to people that it’s real. It’s like, it’s in our face. It’s in our interest to say, “Look, the bodies are piling up.” Virtually everybody in general practice in medicine is having a lot of people come in and complain about this stuff. Now, some of the doctors were saying that’s kind of crazy, this thing is crazy, but a lot of doctors are beginning to think there’s something going on here. In the past some of the only doctors who’ve even gone into this field are people whose wives, or children, or they had it. That’s the only people who’d believe it because otherwise it just seemed bizarre. But any rate, just this last few months, I began to say to myself, “You know the best treatment, the best thing I can do for treatment for people with this condition, to help their lives, is to get the world to go fragrance-free.” So now that’s what I’m doing because then other things will begin to flow. For one thing, people will begin to think “There’s something to this MCS. You know, these people complaining about fragrances, they’re also saying that diesel makes them sick, they’re also saying that smoke makes them sick, they’re saying that gas stoves make them sick, new carpets, paint.” JG: Do you see connections between MCS and gender? Do you see it disproportionately affecting women and children? AJ: I think it’s hard to know because there’s so many factors and because women can tend to talk about their health more. Certainly, with the Gulf War people and a lot of the 9/11 first responders, you have a lot of men getting the condition. My feeling is that women are more prone to developing it because within their bodies they have all those female hormones that predispose them to that. Iris Bell did research on this topic, and there are definitely animal experiments that show you can sensitize female rats faster than you can sensitize male rats. And certainly in the case of my three daughters, the MCS really came on with a vengeance in puberty. Bill Meggs talks about how there are so many autoimmune diseases, like lupus, that have a high proportion of women that get it. Rheumatoid arthritis has a significantly higher proportion of women. Multiple sclerosis, again. Those are interesting indications, and each of those has some overlap. Again, no one’s really tried to tease it out. It’d be interesting to find out what percentage of those with MS also have MCS or are chemically sensitive. And there’s a certain amount of the rheumatoid arthritis people that might have MCS. At any rate, I think that whole question of gender is not very well answered. I think you could look at the Gulf War, those people were primarily male, and they did develop MCS. But it took really huge exposures to push them over the edge. Those men could tolerate an awful lot before it pushed them over the tipping point. And I think the tipping point is sooner for women. But as I say, I think no one’s really figured it out. As far as children go, that’s very much up in the air. There’s a lot of other research showing that children’s brains are more susceptible to chemical exposures. But as far as MCS, you rarely see it diagnosed early. It’s only children of MCS parents that see the connection who might get a diagnosis. JG: I love the phrase that I think you used when your daughters first got sick – you knew to ask the right questions. I just thought empowering people to ask the right questions is so important. AJ: I mean, my oldest daughter at age 12, she suddenly got a migraine for the first time in her life. So I asked, “Did you eat something unusual? Were you exposed to something unusual?” And she said, “I just ate a chocolate covered cherry.” And so she didn’t eat any more of those, and she didn’t have any more migraines. Then that summer, she came home one day and said, “Oh, I’ve got a migraine.” “Did you eat anything unusual?” “I ate one of those packaged cherry pie things.” Cherries are preserved with Red #2, a certain dye that is very unique. They shouldn’t allow it but they do, because it’s the only way you can get a maraschino cherry to look red. So at any rate, yeah, she will get a migraine now from perfumes. Back when she was working as a lawyer, her New York office sent her to London for a year. She called up and said she was getting a horrible migraine every time she used the bathroom because of the air fresheners. And of course her office in New York had just gotten rid of those things, but she couldn’t get the London office to do that. So I quickly sent her a little gas mask, just a cloth one with the activated charcoal that’s not too obtrusive, and so she just used that whenever she went into the bathroom, and that worked. And just looking for causes is very important. And I just get impatient too. I am contacted by a lot of people, and I find out they’re still living with a gas stove. And I say look, some of the leading doctors in the field refused to even treat a patient if they were living with a gas stove or hot air gas heat. It’s like why even bother with this, why even tell other people they can’t wear perfume if you’re using a gas stove. There are some things in your life that it’s harder to change, like what other people do. But you’ve at least got to start getting everything right that’s under your own control. And I think we’re at the point where society is beginning to see that these things are causing symptoms. And even if we cannot figure out the mechanism, how this is happening– who cares? People have known for years that if you punch somebody in the face it’s going to hurt them. Do you really need to analyze how the injury happens and why? This is obvious. Anyway, those are somewhat recent thoughts and all. But as I say, I think one reason why I can add more to the field than most people who work on MCS is that they’re in their own tight little group of very sick people. They don’t see the average range of people. They can’t go out and travel. And so they’re getting kind of a distorted view of things. And so I am really going to push the fragrance-free workplaces issue. The Center for the Study of Women has adopted a fragrance-free policy in our office. Learn more about our Share the Air campaign to find out why we think going fragrance-free is the right choice for everyone’s health.