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.

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