Episode 23: Emerson Wheeler and Jan H.

Jan H. lives in Southern Vermont, and in this episode, she tells her story of living with multiple chemical sensitivities to Emerson Wheeler, Health Equity & Community Engagement Coordinator at the Vermont Department of Health.

Jan talks about how Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, or ME/CFS affects her options for housing, employment, healthcare, and just about every facet of her life. She also shares what other people can do to advocate for themselves as well as make it easier for her and other people with ME/CFS to be included in their communities.

A full transcript appears below.

Emerson Wheeler: Welcome to the podcast Green Mountain Disability Stories. I’m Emerson. I use he/him or they/them pronouns. I’m a white person with short brown hair and rectangular glasses and a plaid blue button up shirt on. And I work at the [Vermont] Department of Health as a health equity coordinator for disability. And I’m excited to interview Jan today.

Jan has multiple chemical sensitivity. She also has ME/CFS, which is more commonly known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, as well as two chronic pain conditions. She works part time from her home in Southern Vermont, and in her spare time, she advocates for improved indoor air quality, and runs a website called FragranceFreeFriends.com.

Jan, do you want to do a little intro of yourself and your visual description?

Jan H: Thank you, Emerson. I am a fair-skinned woman with dark, short hair and dark glasses frames. I’m wearing a green sweater and a headset for the interview.

Emerson: Thank you. Do you want to start by just telling us a little bit about, like what it’s like to live with multiple chemical sensitivity and your other conditions?

Jan: Sure. And, you know, I want to say just how much I appreciate being invited to this podcast because I feel like the health conditions I have are not, like, not super well understood. There’s a lot of misconceptions about things. So just thank you for having me on.

For me, I came down with the Chronic Fatigue Syndrome, ME/CFS, about 23 years ago. You know, I was pretty much in the peak of my productivity. I was working full time, and I was on the board of my church, I was on the local Conservation commission.

I got a — I call it just the worst stomach bug I’ve ever had. It was pretty horrible, but it didn’t last very long. But after that I was just never the same. I remember going into work and I was just dragging, and telling my boss like, “I haven’t had a good day in two weeks. I don’t understand what’s going on.”

And there came a point where I couldn’t keep it up.

Like, there was a standing room only meeting that they had for work. And I had to leave. And I went to the nurse and I’m like, “I don’t know what’s going on.”

And so she, you know, told me to go home and go see my doctor.

I was extremely fortunate to be diagnosed with chronic fatigue syndrome pretty early on. It’s a diagnosis of exclusion. They say, “Well, you don’t have thyroid — your thyroid is okay. This is okay. That’s okay. You must have chronic fatigue syndrome.”

And she was knowledgeable enough to tell me that what I really needed to do was pace myself? Not try to push through? And just take really good care of myself and let my body try to restore itself.

Over time… I got a lot better. I mean, there was a period of time when, you know, I wasn’t working. I was pretty much just lying on the couch reading. I read through the entire Bible. (I did skip some of that, like really lengthy stuff in the middle with all of the families and everything.)

But I mean, I just I couldn’t do much. Just the smallest everyday tasks became utterly exhausting.

I couldn’t access like, half of my vocabulary, which was infuriating for a person who really works a lot with words. And… there were other things that went along with it: body pains and stuff. And people are starting to hear about Long COVID now, which is very similar. And some researchers are saying that there’s a certain percentage of people who get Long COVID who are going to end up with ME/CFS.

So I think it’s really timely, you know, to understand what chronic fatigue syndrome is.

For me, I was working at home when I started working again. They set me up with remote access, which at that time was pretty uncommon. And so I’d been working at home for a number of weeks, and my work was pretty much just stuff on the computer.

Luckily, there came a day when I got up and I’m like, “Boy, now I feel pretty good.”

I think I called my boss up, I said, “I’m going to come to work today. I think I can come to work today!”

By the time I ate breakfast, finished taking a shower and getting dressed, I was like, I can’t drive to work.

And I had to call him and say: “Oops!”

So it took a long time. But eventually, you know, I gained a significant amount of recovery. I’ve never been able to work full-time since then. It’s always been part-time, which, as you can imagine, has been financially very difficult. At this point, the thing that really impacts my life the most is the multiple chemical sensitivity.

It’s not that I’ve gotten over the Chronic Fatigue Syndrome, but with time I started to realize that… it seems like it may even be that the chemical sensitivity is kind of what led to the Chronic Fatigue Syndrome. It was a major stressor on my body, and maybe that one illness just put me over the edge. The last straw or something.

But living with the multiple chemical sensitivity… it’s, you know, it’s kind of like an allergy, but not it’s not a “classical” allergy. Again, they don’t understand it super well. But the MCS affects like every aspect of my life. Like:

the products I can use
where I can live
where I can work
who can come into my home
how I shop
when I can be out in my yard or not.

And the reason is because it’s not just the chemicals that I choose to use, but it’s the chemicals that other people use that are volatile, that get into the air and I breathe them in. Caused me a lot of trouble. And that’s the stuff that I, you know, have very little control over. As you can imagine, it can be pretty hard in the workplace.

That place I was working when I first got sick, they had a lot of chemicals there. And although I was in an office job, it was in the same building. And you walk past the chemical areas and whatever. And I didn’t think much of it at the time, but I did develop kind of an allergic asthma and then I came down with the CFS. So I think it was all related.

But just as far as what it’s, you know, what it’s like to live with MCS? (And I would say I’m speaking for me, because people’s experiences are so different in terms of the chemicals that they react to. Everyone’s different — and even I’m different over time. It used to be I just reacted to like, 3M desk cleaner and aftershave of the dude who worked next to me.

And over time either, I think it’s a combination of I’ve picked up more sensitivities? But also the chemicals that are used in consumer products have changed over the years since I first got sick. Chemists are inventing all kinds of new molecules all the time. And sometimes they smell interesting. And sometimes they smell good — at least to that chemist.

And they say, “Well, maybe we can market this to the to the scent-marketing companies.”

Who then market to the laundry product companies and cleaning, chemical companies and body care companies.

So those molecules get into these products that everybody uses.

And those kinds of products are not regulated the same way foods and drugs are.

People are absolutely astounded when I tell them that just because it’s on the shelf doesn’t mean it’s safe. Because there’s nobody in charge of regulating… the safety of like, what you breathe in from cleaning products, perfumes, shampoos, laundry products, things like that. Air fresheners is a huge one!

So that was a big core dump. Okay, maybe I should pause and see if you have any questions about what I said? I don’t know. What do you think?

Emerson: Thank you for sharing all of that. That’s why you called it Fragrance Free Friends, your group. Because the fragrances are a big part of this?

Jan: Yeah. So, for a lot of people, the fragrance chemicals are really one of the worst triggers. Like I said, everybody’s different. But, you know, I belong to various support groups on Facebook and places, and we hear a lot about people reacting to fragrances. But there’s other volatile things. You know, things that are used in cleaning chemicals and whatnot that are also a problem. And I can talk more about what the symptoms of MCS can be for different people.

But the reason really that I called my website Fragrance Free Friends is because a lot of people are reacting to these things and have never heard of Multiple Chemical Sensitivity. They just know, “Oh! you know, this is how it started happening for me: when I drive my grandmother to go shopping, I feel I don’t feel well. I get dizzy or I get a headache or I start coughing.”

Well, I wouldn’t have known at the time. That was multiple chemical sensitivity. I just know that I was like, “Nan, can you not wear your perfume when we go?” You know?

And a lot of people are in that boat. And a lot of people, when they talk to their relatives about it, don’t really get taken seriously? I mean, this is not across the board, but there there can be some kind of — what should I say — knee-jerk reactions about it. Like, well, you know, “My perfume is not offensive! It’s a very high quality, expensive scent!”

And I’m like, it is, but it happens to have sensitizing chemicals in it that make that smell. And, you know, they cause me an asthma attack. And I’m really, really sorry to have to ask you that.

Well, some scent fans just can’t get past it. And they just won’t consider that it could actually be a health problem. They may consider the person who has a sensitivity sensitivities to be a control freak or that they’re seeking attention, or something like that. And it’s really sad when that happens. So I just I just want to throw that out there.

What we’re talking about there are fragrance, chemicals, things.

You know, I think it’s a little less personal to say, “Well, you know, the floor wax at the hospital is making me ill because it has perfume in it.”

But when you go to your sister and say “Your perfume is making me ill.” It’s a little tricky. You know?

Emerson: Yeah, that makes sense. It’s hard when you’re invested in your own scent.

Jan: And I mean, I used to be a scent user! This stuff didn’t used to bother me.

Emerson: Yeah.

Jan: So, like, I can kind of understand, but it doesn’t fix the problem for me. *laughs*

Emerson: Are there things that smell good that you can use?

Jan: …Yeah. It’s just.. it’snot a matter of preference. Some people will say, “Oh, I know you don’t like fragrances.”

Well, it’s not that I don’t like them. It’s that I’ve even reacted to things that I couldn’t smell, couldn’t detect. At work one time, I was just sitting there working on the computer and I breathed in, and all of a sudden I was like — *gagging, choking noises*. You know, it was really weird.

And my boss came over and he, like, took me and escorted me to a different room. And he said, “You know, what’s happening is they’re fit-testing respirators in a room down the hall.”

This room down the hall was maybe a quarter a football field away. I mean, it was a long ways away.

And what had happened was they put on the mask, they sprayed this stuff in the air, and if the person didn’t cough, then they knew the mask was working.

Well, then the health and safety person to open the windows of that room to air it out. And they were fine. And they opened the door and one or two little molecules came down, and they got me.

I didn’t smell it, but I just had no idea what was happening. And that was kind of early on in this condition, too. So I wasn’t really primed to expect things like that. So yeah: you don’t have to smell it to have your bronchial cells freak out, you know. That’s what’s happening.

Now, I have different kinds of reactions. Let’s talk about the symptoms.

I mean, for me, it seems to depend on what the thing is that I’m breathing in. Some things give me more typical allergy symptoms, you know: stinging eyes, sore throat, a headache. Other things give me more like what I connect with the Chronic Fatigue Syndrome.

Like when I would go to my relatives for the holidays and they would do their best not to wear perfume or whatever.

But there’s still stuff in the house that’s been there.

There’s scented candles. (Even if they’re not burning them).

Their trash bags were scented, and they didn’t even know it, you know, things like that. And at a certain point I got sensitive enough so that if I hung out there with them for the day, for Christmas or whatever, by the time I got home, I felt like I had the flu.

I would just have to go to bed. I would be in bed for a day or a day and a half with body aches and exhaustion and all of that.

So you can imagine for a person who needs to work, you know, you can’T be exposed to that stuff all the time. It’s a real problem.

Emerson: And that reaction that you just described, sounds very similar to an ME/CFS crash as well. Flu-like.

Jan: Exactly. That’s yeah, that’s why I say some exposures I tend to relate more to that CFS crash kind of experience. Yeah. And other other times it’s just like I start coughing and clearing my throat. I’ve got a lot of — *exaggerated coughing noise* — something in my throat. In fact, sometimes I’m in meetings with people on Zoom and I hear that and I want to say: Are you sure you don’t have some air freshener there that’s bothering you?

I think a lot of people are around fragrances so much in their lives… it’s always on their– for instance, if they wear clothes that are washed in scented laundry detergent, it’s always around them? So they don’t get a chance to notice that it might be triggering some symptom for them because they’re never away from it. You know?

I have a housemate who was close to fragrance-free, and after living here, kind of cleaned up those last few things and really became fragrance-free and was working from home, who started to notice, you know, coming back from a day of going and working in the office — or coming back from going shopping or visiting relatives — started to notice: “Boy, I really don’t feel well. Like, I have joint aches and stuff.”

And I’m like: “Yep. Now, you know, now that you’ve been out of it.” You know? So I think there’s a lot of people walking around.

There are studies that have been done that will show somewhere between a quarter and a third of people will say they get some type of adverse reaction from fragranced products. This is, you know, published research, where they interview people about their experiences.

Now, these are not necessarily people who, you know, only a small percentage of them are as sensitive as I am, and really can’t deal with it. A lot of them are just dealing with it and they know they get a headache when they go shopping or see their relatives and they just don’t worry about it too much.

But I think there’s probably a lot of people who haven’t even realized that that’s what’s bothering them. I think the numbers are probably a lot bigger.

Emerson: It takes a long time to track that. I would say for myself, I don’t have multiple chemical sensitivity, but I do get migraines. And switching from scented products to unscented products in general? I didn’t realize that I had such a consistent headache until I sort of unexposed myself to those for a while.

And then I was like, “Oh, that’s that was. That was a trigger. That was a part of this whole thing.” And now I’m in less pain and didn’t even realize it.

Jan: That’s amazing.

Emerson: Right?

Jan: So yeah… I mean there, there are things, you know, there are things people can do for themselves. And I’ve done a lot.

I mean, for me, one of the biggest things was getting out of apartment living. Because when you live in an apartment, there’s a lot of other people’s air seeping into your space. And I realized after a while that avoiding those volatile chemicals in the air helped me a lot. So I started trying to figure out how to get into a house.

Now: as a person who worked part time, it wasn’t easy. But there was a combination of fortunate events and assistance. And I’m in a house now and it makes a huge difference for me. It’s my safe haven.
And I feel so badly for all the people who have to live in apartments and can’t control their air quality as easily.

But for me, that was like, the second most– probably actually the most important thing.

I was going to say access to medical care can be hard because of air quality issues? But I think the home environment is even more important than that because you need medical care sometimes, but you’re in your home all the time.

Yeah. And if you can get yourself into a safe, clean air environment, you have less medical problems. So, I mean, somebody like me does.

Emerson: What happens to people who can’t get into can’t get out of an apartment?

Jan: Well, they’re pretty sick.

Emerson: Yeah.

Jan: I have a friend in town who is in an apartment and, you know, she tells me about what it’s like.
I’ve invited her sometimes: “Do you want to come hang out with me in my yard for the afternoon?” Because it’s unrelenting, unremitting.

The people below her use lots of air fresheners and it seeps up and… she can open the windows in the summertime, but in the wintertime she can’t. Then when she opens the windows in the summertime, if the neighbor next door is doing laundry and blowing all of their scented laundry stuff into the yard, then that comes in.

I will say laundry products — over the time that I’ve had this condition, the chemicals used in laundry products have changed a lot.

Ten or 15 years ago, they started putting more fragrance in them and different fragrance molecules in them. You probably notice in the marketing: “This is a fragrance booster! This i a scent booster for your laundry!” And this is a scent that will last for six washes or six months or whatever they say.

Well, everybody’s walking around with that stuff on them and everybody’s blowing it out of their dryer vents.

And so sometimes even my yard I can’t be in, because of my neighbors. I have to run inside in the summer, or if I’m in the middle of some home improvement project or raking the yard or whatever, I have to run inside and stop.

So yeah: if I had one thing on my wishlist that I could just wave a wand and it would disappear? It would be, I think, fragrances in laundry products.

And! You know, I used to be a big thrift store shopper. In fact, the sweater I’m wearing came from a thrift shop. And some of my favorite sweaters have come from them, but I finally gave up because you cannot wash the scents out anymore. I would buy things and I’d wash them six times, put them out in the sun, soak them [in baking soda], and finally I’d have to just give them away. So I don’t thrift anymore.

One of the fun little things. And it can be expensive too, because you’ve got to buy your clothes new or you buy things and discover they’re scented. Like trash bags! And then you have to give them to your neighbor.

Emerson: You know, what’s the worst is scented menstrual products. I accidentally bought them.

Jan: I know!

Emerson: A while ago, and was just appalled by it.

Jan: I know! Why is this fragranced? And it doesn’t say fragrance. It would say something like, “has aloe added” and you know, aloe doesn’t have fragrance. But I think what they’re doing is they’re adding an essential oil of the aloe flower, probably, is what it is that makes it perfumed. And so after a while I figured that out and I had to stay away from those.

But do you know the state of California has been passing laws — and some other states have been passing laws — saying you have to label things, and say the ingredients. And menstrual products is one of the ones that got a law passed.

Now, the rules are different for different things. Like for cleaning products, the company can put it on a website, not necessarily on the label of the product. For menstrual products, I think it phased in just over the last few months that they have to be doing it. And I don’t know if it’s on the package or if it’s on the web, but, you know, the states just had to take things into their own hands because the FDA didn’t have any laws. So that’s been big progress. it used to be I had absolutely no idea what part of a product I was reacting to. I couldn’t see the ingredients, so I couldn’t therefore go out and shop for a product that didn’t have that ingredient, because the ingredients aren’t listed.

Well, now you can get lists — the state of California Health Department has a database. You can get a list of what’s in a lot of personal care products by going on there. They call it like the cosmetics ingredient database, but it’s not just makeup. It’s like: aftershave, baby products, deodorant, basically anything anybody uses on their body. The state of California has said, if you sell it in our state, you have to give us the ingredients. And while the companies are [doing that], they can’t do it just for California. You know, they can’t keep the rest of us off California’s website. They’re not going to make special packages just to sell for California. So the rest of us are benefiting because California passed those laws. It’s really nice.

Emerson: That’s like the curb cut effect, but for state laws, huh? *laughs* We’re all benefiting from California getting its act together. Yeah.

Jan: Yeah. And there are other states — I think it was the state of Washington or maybe Oregon. There’s a few other states who have passed laws. And of course, I’m sure the fragrance and chemical industries are just freaking out about that.

In fact, I subscribe to one of the industry publications just to see what they say about this kind of stuff. And they’re like: *grumbling noises*. “You know, this is a problem for us.”

Emerson: *laughs*

Jan: But the thing is, some companies are changing their formulas now they have to say what’s in it. They’re now shamed into it. They haven’t been forced to change the formula, but they’re shamed into it.

So change is happening. It’s slow, but I’m convinced in about ten years it’s going to break wide open.

Enough people are going to realize that they have this problem and start asking for a change. So I’m hopeful.

Emerson: I do feel like the world has started to realize how important air quality is, and indoor air quality specifically. I think a lot about like where public health came from, and how we sort of came from realizing that we needed to clean our water to avoid cholera, and like, wash our hands and stuff.

And now we’re realizing, oh, the air needs to be clean too, and trying to figure out what that looks like for different spaces. I know we’ve had rules before, but with COVID and with wildfire smoke and fragrance products, I think it’s getting a new set of eyes on it, in a nice way. So I’m hopeful.

Jan: Yeah, definitely. Boy, the wildfires have been terrible for a lot of people with chemical sensitivities because there’s a lot of people who react to smoke, too. Cigarette smoke, wood smoke. And then when you have wildfires, there’s all kinds of stuff burning because houses burn. So all of the plastic and weird chemicals in there burn and get into the air. It’s pretty nasty stuff.

It’s not just wood: paint, linoleum, all that stuff burns. When buildings start burning, it’s terrible.

But with COVID, it’s really interesting. They did start talking about exchange of air in buildings and or cleaning the air using like ultraviolet stuff, technology like that. And it’s an opportunity to say, hey, don’t forget about the volatile things that we’re putting in the air that we don’t really need to be, because really the cleaning chemicals don’t need to be fragranced. There are fragrance-free options.

A lot of cleaning chemicals don’t even need to be volatile — meaning they don’t even need to be things that evaporate easy into the air.

Like hydrogen peroxide is an example of something that kills germs. But it’s not a real volatile thing, like alcohol is or like ammonia is. And so a lot of the hospital-grade sanitizer sprays are made from hydrogen peroxide but you can get them in fragrance free. And some hospitals know that and some hospitals don’t seem to know that. It was interesting.

I have a couple of COVID stories. (How long is this podcast anyway?) I have stories.

Emerson: Go for it.

Jan: So, you know, I had this condition and then COVID came along and all of a sudden there was this great increase in sanitation activities.

People wanted hand sanitizer everywhere and they were spraying down everything. Some facilities were even fogging their places. I think that might be more like warehouses and stuff, but they would actually, you know, use these figures that put sanitizers into the air overnight while their staff are out of the facility. Well, a lot of those they were using things with fragrance in them.

And the local hospital that I mostly to go to had been doing pretty good, pretty well with air quality. They had no air fresheners. The bathrooms had fragrance-free hand soap in them. And that’s not just a matter of me wanting to use the soap or not. It’s that every time somebody uses a soap, the fragrances get into the air.

Because fragrances are fragrances because you smell them, right? Well, how do you smell them? They get into the air, and if you’re smelling them, that means people with masks are breathing these things in, whatever those chemicals are, right? And they’re not made from flowers anymore. They’re made from chemicals. So the hospital was doing pretty well. They didn’t have air fresheners in the bathroom or those smelly toilet vents or anything like that.

And then COVID came along and I went in there and it almost knocked me over.

I said, What are they doing? I went in for a blood draw. Well, they had those Purell stations that stand up and you, you know, get a squirt of Purell.

And they were making everybody use them and they were full of fragranced Purell. So everybody who walked in the room was walking around spreading fragrance. The whole room was just reeking of it.

So I went through this whole back and forth thing with the hospital saying, “You know, there’s fragrance-free Purell, will you please switch to it?” And they came back and said,

“Well, our supplier doesn’t have fragrance free Purell. And anyway, here’s the spiel from the manufacturer saying it’s a very light fragrance and it’s made to neutralize the alcohol scent!”

And, you know, I’m like, well, that’s a big load of B.S. from the manufacturer. I didn’t say that, but I wrote back nicely and said,

“Here are the ingredients. Okay, it doesn’t neutralize alcohol, it covers it up. It adds fragrance to the air.”

And I sent them screenshots of fragrance-free Purell options that I got from the Purell website saying: this fits your machines.

So finally the patient advocate got back to me and said, okay, are purchasers going to get those? (He had to actually ask the supplier to carry the fragrance-free version.) And they said, yes, they would. So it’s an example of how hospitals don’t even know what the options are, and they’re making patients sick by not knowing.

So that got worse with COVID and the hand sanitizer craze and all that.

In fact, when I went to get a COVID vaccination, at that point the hospital hadn’t straightened out their act and I really didn’t want to go in there. And I wasn’t really sure where I was going to get a shot. But I looked online and the local EMS organization, the ambulance people, the rescue people were offering a shot clinic.

They were setting up a trailer in some parking lot somewhere and doing it. And I thought, well, I’ll take I’ll take my chances with that one. And I went and I stuck my head in there and I’m like, Oh. Fragranced Purell.

So I stepped out and I asked the man:

“Is there any chance I could get my shot out here outside the door? Because your hand sanitizer is fragranced. And it’s a problem for me.”

And being a rescue person, they’re used to everything. He was like,” Oh, no problem here, I’ll come right out.” And he did it and it was great.

But I mean, if you want people to get healthcare, if you want people to get a COVID shot, provide a place with good air quality, you know? It’s like, I can’t believe the lack of understanding there is about this.

And it’s not just for us. Like, people who have asthma are often triggered by stuff in the air. It’s a whole list of things.

There’s mast cell disorders, mast cell activation syndrome, people who have had what is it, traumatic brain injury are sometimes very affected by fragrances in the air. Emerson, you mentioned migraine. Can you think of any others?

Emerson: I think people are showing up with mast cell issues and I’m not sure if their fragrance sensitivity for them is either mast-cell related or just long-covid related in general. But I would say that’s a big overlap too.

Jan: Anybody with lung issues is probably going to be more likely to be challenged by stuff in the air.

Emerson: Is your request to do things outside? Is that something that if somebody’s listening to this recording right now and they’re like, “Oh, this is something that this impacts me!” Is that something that they could ask their doctor or their provider to do?

Jan: I haven’t ever asked a doctor to do it because I don’t think it would be acceptable to them. Because this was the emergency rescue people, you know, I think they were very game.

There are other cases where not having to go into the building has been possible, like the veterinarian has come out to give my animal a shot just on the porch of the facility. Shopping has gotten a lot easier since COVID because all of a sudden curbside pick up was available in a lot of places.

And that has made my life a lot easier because, you know, when I had to go into a store to shop, I would get totally saturated with all the fragrances, not only from the products they have on the shelves, but, you know, they’re cleaning the floor with scented stuff and sometimes using air fresheners and things. So for me, you know, my strategy at a store would be the same as at a healthcare provider in the past, which is I would put on an extra layer to kind of buffer me against being totally coated with the stuff. I would put on an extra layer of clothing that I can remove as soon as I get out of the place. And also I would put a layer of lotion on my exposed skin because that wipes off easily with an unscented wet wipe when I get in the car. And I’d wear something over my hair because hair is very absorbent. So that way when you’re sitting with yourself in the car on the way home, you’re not making yourself sick with all those fragrances that you picked up at the doctor’s office or at the store or whatever.

So I just have a bag in the car, and I just take off my hat and clothes and whatever and put them in there.

The other thing I do, I have to wear a mask when I go to the doctor’s office or any services, really. Social services, eye doctor — I was wearing a mask long before COVID. And the kind of mask that works on volatile things that are in the air — like fragrances or cleaning chemicals — is a mask that has activated charcoal in it or carbon. And so some hardware stores carry them for like paint fumes. But I found other places to get them that have more charcoal in them and work better.

Anyway, I always keep those on hand and I wear them when I go to the doctor and so that prevents me from breathing in the stuff too much. It’s not perfect, but it helps. 95% filters out that stuff. So that’s how I do doctors.

Now, when you think about going to the dentist, you can’t wear a mask, right? So for me I had a great dentist; they had very little fragrance. I think I was still bugging them to get the fragranced soap out of their bathroom. But for the most part, you know, the air quality was good in there.

And my hygienist was wonderful. She knew that I had sensitivities. She would have even asked me, “Well, is the cinnamon fluoride treatment okay?”

And I’m like, “That should be fine. It’s a little less volatile than the mint. Mint won’t kill me, but…”

Well, they sold their practice and the new people started doing the laundry with scented detergent. Either that or they just started doing it at the regular laundromat — which all those machines are so full of residue from scent boosters and everything that it’s just like washing stuff in scented detergent.

So the things that people wear while they’re working on you, the smocks or scrubs, whatever, they all were stinky then and the, I don’t know, the strategies that I use at the doctor just weren’t going to work at the dentist. So I looked for another dentist. I haven’t found one locally. I found one that’s pretty far away and doesn’t take my insurance.

And as a person of low income who has a hard time driving long distances because I don’t know if I have the energy to get back? (I don’t know if I’ll end up having a migraine. I do have a couple of chronic pain syndromes. Migraine is one of them. I actually have unremitting daily headache now, which I haven’t figured out.) So I don’t drive much anymore because I’m not sure I’m going to be able to get home.

I haven’t had dental care in four or five years is what it amounts to.

They want patients to be at ease, so they’ll have a a signature fragrance. It’s lavender or whatever, but it’s not actually lavender. It’s like fake chemical lavender? And dentists are very commonly scenting using scented products.

And, you know, if you want to scope out a place, all you have to do is stick your head in the door.

You don’t have to know what products they’re using. You don’t have to see the list or see their cleaning cabinet. You just open the door, stick your head in and say — *breathes deeply* — okay, I’m not going to be here, and you close it and go to the next place. You know? And it’s tough to find a place.

Emerson: That’s interesting to me also, because I feel like I’ve been looking for a COVID-safe dentist. And I found that some dentists have their act together really? They have a separate room for each patient, with a closed door, and they have an air purifier going and they wear an N-95. So that when you take off your mask, you’re the only one unmasked. And they’ll crack a window, and they have all that information up on their website — and then other dentists don’t have any of that information!

And I wonder about the overlap between fragrances and awareness of the indoor air quality for COVID precautions. I feel like dentists are more cautious about COVID when they are cautious.

Jan: Yeah, especially because some of them know to be cautious about mercury. So they understand protect personal protection and stuff like that because they’re drilling mercury and mercury vapor can get into the air.

But, you know, it’s all over the map. I actually was really excited to find a dentist who had quite good air quality. They weren’t using a lot of fragrances, they were quite natural. They were knowledgeable about the mercury thing (I was thinking about having take having mercury fillings taken out at one point.)

And I went there once before COVID started up and was kind of excited about it.

And then COVID came.

They have a pretty open format. They don’t have doors that are closing. And I actually learned from some things that the doctor said, the dentist said or posted or something, that they were not really concerned about COVID very much.

And so I called up and I asked, “Are you doing air exchanges or anything in light of COVID?”

And they said no.

So I didn’t go back there for my care, even though I had paid $400 out of pocket for my initial assessment there, because they do a very thorough thing and the regular dental insurance doesn’t cover all of it. But I was like, I’m going to invest in this because they’re nearly fragrance free.

Well I finally found my dentist and it was only a half an hour away. But now when COVID came, I’m like, I’m not going in there. I’m deathly afraid of catching COVID because a lot of the people who have Chronic Fatigue Syndrome, they recognize it’s a post-viral fatigue condition.

I’m more worried about Long COVID than COVID because the people with Long COVID have a post-viral condition, and it may last for years. And, you know, here I am. I haven’t been able to work full-time for 23 years or so. I’m just barely getting by. If I have any more limitations, you know, I won’t be able to pay my mortgage.

So, pretty much a lot of my life now is built around avoiding getting COVID.

I did get the one shot, but it gave me terrible joint pains for three months straight. And I said, okay, I’d better not get a second one. I think it’s too risky for me. So I’m just extremely careful about trying not to to contract COVID, so I won’t get Long COVID, basically.

Emerson: Yeah. And I think people like you and I have a little bit more of an idea of like what care looks like when you have a condition that people don’t fully understand? Yeah, because I think once you get Long COVID and you realize how little support there is for you, it’s difficult.

Jan: Yeah. And even like Social Security, disability income: you know, my mom said, well, why don’t you apply for disability income?

Well, because, mom, it’s not a shoo-in like it is for some conditions, like multiple sclerosis or cancer. You have to prove that you have a disability. And you may go through three appeals. And in all that time you’re supposed to be not doing a substantial amount of work. Well, the only way to get through that process, you know, of multiple appeals and whatever, not having a significant income is if you already have a lot of savings and you’re, you know, you’re affluent enough to not work that way, or if you have another person working who supports you.

So the people who need the help the most, the people who really are having a very, very hard time working and don’t have anybody else supporting them, they feel the need to push and keep working because there is no other option for them besides losing their house, becoming homeless, losing their safe place.

And the combination of having something like Chronic Fatigue Syndrome or Long COVID and having Multiple Chemical Sensitivity, well, I would say even just having Multiple Chemical Sensitivity, people are becoming unhoused because either they can’t work enough to afford their house payments or even their rent. And an apartment, you know the whole apartment thing, they just can’t be in that space.

So they end up living in a car or a tent. They have to move down south where it’s warmer so they can do that. There are people who are in dire straits because of it. And then if you think about the social service agencies that they might try to get help from, if those places have hand sanitizer, that’s fragranced or air freshener., they’re not getting help from those places.

It’s a cluster, I’ll say that. And you sort of get treated like you’re afraid of, you know, hand sanitizer or fragrances. And it’s so much more! You’re going to have an asthma attack! You’re going to have a physical reaction to these things!

Just because you can’t see them in the air floating around you doesn’t mean that they’re not there. And then your access need for good indoor air is not valid? It’s hard. People aren’t willing to meet your access need because they know they can.

There’s this thing where if someone just walked in to see me here, they’re like: *pretends to look someone over* “Well, you don’t have a disability.”

People think of disability as something that’s like, you know, I’m missing a limb or I can’t move around or I can’t see or I can’t hear.

But a disability is you are prevented or significantly impaired from doing an activity of daily living. If I can’t breathe the air without getting extremely ill, well, what is more basic and daily living than breathing, right?

Here I am in my safe environment. I’m doing pretty well. I mean, I have a headache. My concentration is not great and I’m going to be really worn out by the end of this interview. But, you know, I look okay.

Yesterday, I wasn’t looking quite as okay.

I was lying down. I’m not feeling well and also taking it easy so I can do this thing today.

So there’s a lot of a lot of things that people don’t see about these conditions. You know, some people call it an invisible disability sometimes.

Emerson: Yeah, I recently heard somebody refer to it as a hidden disability instead, because, you know, if you know what you’re looking for, you can see the signs in somebody else. But often people just don’t bother to look.

Jan: Or they’re not seeing you at a time when it’s– I mean if I’m really bad, I’m not going out. Right?

Emerson: Yeah. Now I think about that a lot with things like migraine or asthma or– I feel like most disabilities are dynamic in some way. You know, even if you’re not disabled, sometimes you feel better when you wake up than other times, you know?

Jan: So dynamic, meaning changeable?

Emerson: Yeah, like you are not always disabled by a migraine. Sometimes you’re okay and sometimes you can’t look at a bright light, right?

Jan: Yeah.

Emerson: But it’s still a disability either way. And I think a lot of people don’t realize that.

Jan: Yeah. And I really try to encourage people to think about chemical sensitivity as a disability. You don’t have to say: “I’m disabled.” Like you’re abled in a lot of ways, right? But you have a disability that prevents you from doing certain things and you should not be shy.

I tell people about asking for accommodation often and use the word “disability”.

“Accommodation” is what I need. And if you say that at a healthcare organization, all of a sudden they’re going to look at it differently.

Emerson: Yes. Because you have rights.

Jan: You have the Americans with Disabilities Act.

Emerson: How would you phrase something like a disability accommodation request — not to put you on the spot.

Jan: How would you phrase a disability accommodation request? It depends a lot on the individual and what’s going on, you know. So is it in the workplace, Is it at the doctor?

And what’s actually bothering you? Are other are there people involved? What is the change that needs to be made, you know? And disability accommodations by and large are pretty individual.

So for instance, in a workplace, I am being severely impacted by the products that the cleaning company uses. So my disability accommodation would mean that either the products used need to be changed or I need to somehow not be exposed to them. And then the company should work with you on “Well, you know, what’s the most reasonable thing? What can we do?”

And you know, they may go one direction or the other, depending on what they feel is feasible. Some people end up working at home and I feel like that’s become a lot more acceptable since a lot of work-from-home was triggered by COVID.

You know, there are people who had been begging for work from home for years, and all of a sudden now everybody’s working at home because of COVID.

Why couldn’t they do it before?

Because they didn’t take it seriously.

Maybe it’s easier now to get taken seriously because of that. I don’t know.

Emerson: I will also say I have learned that you don’t necessarily need to disclose your specific diagnosis to get a disability accommodation. You can just say: “I have a disability, this is my need.”

And you don’t you don’t have to share like your specific–

Jan: The gory details like I have. *laughs*

Emerson: Yeah.

Jan: And I think that’s really I think that’s really important because of sometimes the negative reaction or stigma that’s attached to something like MCS. I mean, if you tell somebody you have Multiple Chemical sSnsitivity and they go look it up on the Internet?

I can give you all kinds of scientific information. In fact, if you visit a eb site called FragranceFreeCoalition.com, they have a great poster with all kinds of citations, links to citations, peer-reviewed journals that show our research on fragrance chemicals and health conditions or adverse reactions or symptoms. Okay.

But the general person will Google it. And what they’ll come up with at the top is the Wikipedia page for Multiple Chemical Sensitivity.

Now, I love Wikipedia. I use it all the time. It’s wonderful. And there’s a lot of good information in Wikipedia, but for some pages for topics that are controversial, the information is not that balanced and the reason for that is that Wikipedia is crowdsourced. It’s edited by people like you and me, and people have different interests, and because of the lopsidedness of the site, it basically says — I don’t know what it says these days, but it’s always very, you know, like, well, this is not necessarily a real thing. It’s very disputed. You know, this research says it is happens because of anxiety and never really will it allow the wording that chemicals in the air are causing people symptoms.

So the thing that I conclude and that a lot of my friends conclude is that the folks who have been really active in editing that site are probably representatives of, you know, the chemical industry, fthe ragrance industry, people who have those kind of interests.

I actually went on and tried to make an edit and it was reverted back the next day. So, you know, we we only have so much control.

Long story short, when your average person goes and looks up Multiple Chemical Sensitivity, they might come away just thinking you’re neurotic.

So you don’t necessarily want to say that to your employer, but maybe you want to say, “I have a respiratory condition. I have an accommodation need and the air needs to be cleaner for me.”

This is how you can do it.

Emerson: Yeah, well, it’s not just you. I remember — this was right before COVID started — but I remember being in med school and being told by a professor that post-viral illness, chronic illness doesn’t exist. And he was very adamant. But we know now that it does. And we knew then too.

But I know that like it, it takes science a long time to catch up with itself. The Semmelweis effect. (Semmel-weiss? Semmel-veiss? I don’t know, it’s German, so maybe it’s -veiss.) But that was that guy was a doctor who said, maybe we should wash our hands. And everybody made fun of him.

Jan: Oh! Yeah! Yeah, yeah.

Emerson: And so now we’re like, maybe we should clean the air. Maybe we should, like, not be putting all of these chemicals in our air. You know, of course, science is going to be really reluctant to change big institutes. Institutions usually are, but it sounds like the change is very necessary and valid.

Jan: Well, there’s so much variability, too. I mean, even when even when the science is there, sometimes the practitioners, you know, are just going on what they knew years ago. And I mean, that’s not to diss doctors. You know, the medical system now is put so much pressure on them that even if they wanted to take the time to really dig deep into some interesting condition, they don’t have time to do it. The insurance companies limit their time with patients. It’s tough for the medical people, which is why, you know, for me, I focus on education wherever there’s an opening. You know, if I can talk to a medical professional. If I can talk to somebody who works at a nonprofit organization, somebody who works for the state government — I’ll talk to anybody.

And the thing is, the more people I talk to, the more I’ve started hearing, “Oh, yeah, my sister has that. Oh, yeah, my wife has that problem.”

Well, do you remember I said studies have shown that like a quarter of people have these problems? So the more people you talk to, the more you’re going to run into — you know, they’re hearing it from more than one place.

And the strategy that marketing people use is to give their information to the consumer in more than one way from more than one place. So the more of us say something, you know, to anybody we can, you know, people hear it many times from many different sources — that’s when they start to take it seriously, just like with advertising.

And so, you know, we’re moving it forward very slowly. Very slowly.

Emerson: Yeah. I feel like a lot of the times it’s like problems are dismissed because they’re just like, oh, it’s it just impacts 1% of the population or something. And to that I say that’s 1% of the population you’re leaving out. But also it’s probably more that too. Like, we’re usually underestimating. Right?

Jan: Yeah, because of several things we talked about earlier in this conversation. I think we are underestimating.

Emerson: I just had one other question for you: I was thinking a lot about the floods this summer and what happens to people who have to evacuate and/or return to their homes, and thinking about mold exposure and stuff and how that might impact somebody with your conditions or your constellation of symptoms.

Jan: There’s a lot of overlap between mold sensitivity and chemical sensitivity. Mold — and mildew is a kind of mold — mold and mildew emit VOCs. They make Volatile Organic Chemicals and put them into the air.

So the sensitivity is not just that you ran into a mold spore and breathed it in, but actually the volatiles from the mold colonies can get into the air and make people extremely ill. So there’s a lot of overlap in that.

A lot of people think that their chemical sensitivities were actually triggered originally by a mold exposure. So there’s a lot going on there. But obviously, like you said, with more flood events, with more houses or cars that have been exposed to flood events, there’s a lot more problem with air quality because of mold.

And really with mold, the damp materials have to be dried out or treated within 48 hours or you’ve got a mold problem. And “treated” is generally using something like there’s very alkaline kind of paint that you can use, and one of them you can actually put on wet wood. Lime Prime, it’s called Lime Prime.

You can actually use it to treat wet, porous materials so that you can get them treated before the 48 hours. But of course, you’ve got to have it on hand or else. Because you can’t buy it at the local hardware store, you have to order it from one of these green building supply places, or the Lime Prime company that makes it.

So a lot of places don’t get treated in time. There’s hidden mold. It makes people sick for sure. Yeah.

And then there’s the question of, well, what if you’re going into a public building that’s that’s really old and has had mold, not enough to bother the average person, but to bother a sensitive person? So there’s access issues sometimes with that.

Emerson: That’s a good point. I hadn’t thought about old buildings.

Jan: Yeah. I mean, they’ve got such a history. Different things have happened and different things may have been covered up over time. On the other hand, sometimes old buildings are more resistant to mold because of the kinds of wood that was used. There’s a lot to learn about this topic. There’s whole webinars on it and everything. It’s pretty complex and there are specialists, there are consultants, and there are also just websites and DIY advice places that you can go if you’re worried about mold. So I encourage people just to Google it and find some some different sites.

Change the Air Foundation is one group that’s actually very high profile and working on mold issues, and they’re doing great work and they have a conference and things. So there’s a lot to learn from them.

Emerson: I haven’t heard of them before. There was a Canadian expo that happened recently, the Clean Air Expo, where they were all these new technologies for cleaning the air inside buildings and stuff. Great. That sounded pretty cool.

Jan: Yeah. Change The Air I believe is mostly focused on mold. So it’s not just about air exchanging. And I don’t believe they’ve focused on other volatiles yet, but it’s kind of a natural fit. BYou know, you have to focus on your own issue and do a good job on it. You can’t do everything. So they’re focusing on mold, you know, I’m focusing on fragrances. And, there are different groups doing different parts of it.

And, you know, people who have these conditions a lot of times get really hopeless. I mean, there’s a lot of suicide amongst people with chronic conditions, especially when they’re so misunderstood. But I really want people to have hope that we are making change. And there are people who understand and I just hope people will have the same hope that I have.

Sometimes people ask me, well, what keeps you going?

And I think what keeps me going is the time when I’m going to see when it all breaks through, just like it did with organic food.

When I was in college, organic food was so fringe it was like, What the heck? And then it became on every grocery shelf. One of these days, you know, the tide is going to turn and it’s all going to change for air quality.

And I’m going to be around to see that. And I’m going to be really happy.

A lot of a lot of what we’ve been talking about is really talking to the people who have the condition. And, you know, for them to be understood and for them to take measures.

But I want to say something to the people who aren’t bothered by this condition and think that it really doesn’t affect them, which is: first of all, if you’re involved in a business that touches the public and you’re using fragrances, these are personally or in the, you know, cleaning of the facility, you’re limiting access for a certain number of people.

You’re going to feel like it’s impossible to get rid of all the fragrance in the facility. It feels really huge, but I would want you to not feel that way. Don’t look at this Mount Everest of things. Look at the small steps you can take because every single thing you change is going to help some portion of the people.

You get rid of air fresheners, maybe 5% of the people who couldn’t come into your field facility now are okay with it.

You start cleaning the floors and surfaces with fragrance-free, another 5% can come in.

And I really want to point out that a lot of times when you ask for fragrance-free accommodations, the business, the first thing they’ll go to is, well, we can’t control what all the people do and where.

And my answer to that is don’t start with the people who come into your facility, because I agree it’s super hard to control what people do.

The place that you start is the practices of the business itself. That the business can control: the products you use, the products you purchase, the contractors that you have doing things like cleaning your facility, cleaning your your automobiles, like if you’re a transportation provider and it’s going to affect not only the customers or clients that want to come in, but it’s going to affect the people who work for you and the people who want to work for you.

You’ll have less employees with migraines. You’ll have employees who find that they can work at your facility. Whereas before they stepped in the door and said, There’s no way I can work here. And right now it’s, an employees market employers, if you want to find more hires, make your air quality good.

So these are the things that I think of, you know, from the end of what can a business do and what can a person who doesn’t have sensitivities do.

The more choices that you make in your shopping to pick the fragrance-free instead of the fragranced, the more your loved ones are going to be able to be near you, the more your tax dollars are not going to have to pay for health care and disability benefits for people who are disabled by being exposed to chemicals in the air.

It affects you, it affects everybody.

So everybody has a part to play and I hope people will take it seriously and I’m really, really glad that I have had a chance to share this with everybody.


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