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.

https://youtu.be/ZCY9ho40vMc

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’...