Peggy Munson is an award-winning writer who has published poetry, fiction, and essays in numerous venues. She is the editor of Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome and author of the novel Origami Striptease. Peggy was born in Normal, IL in 1968 and got sick with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) in 1992, and later with Multiple Chemical Sensitivities (MCS).

Heidrun: How did you get sick?
Peggy: When I was in College I grew very ill with sudden flu-like symptoms that basically never went away. I had what is known as prodrome before that, meaning I had a lot of pre-illness symptoms that were just popping up such as vertigo. One of my strangest symptoms was, when I was reading text, the words stated rearranging themselves, almost getting fluttery on the page. It is a visual impairment that is a neurologically-mediated problem but of course I thought I was crazy and couldn’t read for my classes. I dropped out of school for a semester because it was so bad.

In 1992 I was struck with CFIDS and I just never recovered. I went from a high-functioning person to being totally disabled, being sick from walking up stairs. Constant flu-like symptoms. Over time I started developing symptoms from all kinds of sensitivity to all kinds of chemicals. Over the years I became more reactive to perfumes and really strong scents.

It was a surreal descent into hellish illness over the period of a few weeks. I had symptoms I never experienced before: I had constant vertigo, extreme light sensitivity, almost hallucinatory experiences where I couldn’t see things clearly because my vision was going out; Extreme fatigue on a level I can’t describe, chest pain, running a fever, sore throat, runny nose, pain, extreme cognitive problems.

I was completely disabled from that moment on. I was trying to work, the only way I could work was to work part time in a psychotherapy center and lie down for the 50 minute hours when the therapists were in session. I was diagnosed 2 years after that.

At this point I can’t be around people unless they do elaborate preparations. I can’t go to almost any place that exists. I get sick in medical facilities, indoors, bookstores, clothing stores, auditoriums, any place were people are.

I am pretty much confined to this area. And getting around my house I use an electric chair. I use oxygen. I have a hired person to go to the store for me. If I do go to a doctor’s office, I have to wear a North filter mask – it looks like a crazy military gas mask. Nobody wants to put this on, but this mask has been actually liberating for me because it enabled me to go places I couldn’t go to before. But I get a lot of strange reactions. And a lot of pity.

What made you sick?
Peggy: I don’t know conclusively. My suspicion is that it was pesticides. I grew up in central Illinois. About 89% of the state of Illinois is farmland. And 99% is pesticide-using farmland. I was just completely surrounded by pesticides my whole childhood, my adolescence. And then, when I was in college right before I got sick, my landlord had sprayed pesticides in the house. I was an avid bicyclist and I biked in the cornfields, which ironically, I am thinking my behaviors contributed to my illness because I was just riding my bike through the so-called “fresh” air. And they were spraying right then. That’s what happened.

What did you study?
Peggy: I was studying creative writing. I am still a writer. But now my cognitive impairment is one of my most severe symptoms. I have really a hard time even talking; I have word-finding problems. Writing even a cohesive sentence is really hard for me. It’s also hard for me to sit up for a long time because I have orthostatic intolerance. Which means, when I sit up, my blood pressure just plummets low and then my heart starts racing trying to move the blood around. So I get very ill and I have to spend most time lying down or I literally don’t get any oxygen to my brain.

So word finding problems, memory loss. I start writing a story and if I actually don’t print it out and put it next to my computer, I forget it exists.

I look on my computer and I see I started writing something I have no idea it actually happened. I do write and I publish stuff, but it’s extremely difficult for me now to write things. It is almost a challenge for me. I want it so badly. It’s so important to me. But it’s the last semblance of my old life and I work hard to keep it.

What do you write and do you reflect about your illness?
Peggy: I am mostly a poet and my poetry is mostly about my illness now. But I published a book about CFIDS and now I am writing essays about MCS because it is so important for me.

How and when were you diagnosed?
Peggy: It took me two and a half years to get diagnosed. The first place I went to was the very cool feminist health clinic. They were so dismissive to me - they just said: “you are fine, come back for a pap smear.” Then I saw an AIDS doctor. He basically said, “you are fine” and tried to sell me some affirmation tapes.

Because I look really well, as most of us do. We look great. I almost looked better. I lost some weight and people said, “you look fantastic, how did you lose the weight?” It’s almost as if the sickness made me appear better to the world.

I finally found a doctor that was just really familiar with the illness and she diagnosed me. Problem is, since I have two illnesses - since I have CFIDS and then I have MCS, which often overlap - but most docs specialize in either one or the other. It’s amazing in medicine, how much people don’t draw connections! For example with CFIDS, they don’t think of it as an environmental illness for the most part. I had to stop going to the CFIDS doctor because her office was too scented and toxic for me. It became harder and harder for me to see specialists in my own illness even though a lot of the people with the illness have also MCS.

Is CFIDS caused by environmental factors?
Peggy: Nobody knows for sure, although one of the interesting facts of CFIDS is a lot of people think it’s the same as Gulf War Syndrome. In the first Gulf War, the first time we decided to bomb Iraq, something like 147 people were killed in battle. When the soldiers came back, a hundred thousand of them became ill with Gulf War Syndrome (GWS). Most of them are considered to have MCS, CFIDS or fibromyalgia. Or some combination. There is a strong overlap. It’s largely considered to be an environmental illness. GWS is considered to be caused by the toxins in the gulf. I definitely see it that way!

Did you have support from your family, friends and social environment?
Peggy: I went to college in Ohio, when I got sick. I had a partner who helped me quite a bit. And we were together for five years. She sustained me, she saved me. After that it was extraordinarily hard. In fact I was just looking for people to take care of me. I was far away from my family, far away from most of my friends. I was really exiled because I had gotten out of college and everyone was starting their lives, they were starting their careers, families. I was 23 when I got sick. Time kept passing. I was desperate for help.

But most people took a long time to accept it. My family was pretty supportive originally but they are far away. Their ability to support me wasn’t very high. Most of my friends, I don’t know that they disbelieved - it’s just that their lives revolved around activity and I was left behind.

I actually made this friend and she actually said “I’d love to be your friend but I need friends who are more active.” People would say dismissive things to me not realizing that this is a completely ableist thing to say. And that’s really hurtful.