• Rosario Zavala

Chicagoans is a first-person account from off the beaten track, as told to Anne Ford. This week’s Chicagoan is Jenni Prokopy, person living with chronic illnesses and founder of

“Let me see if I can get my list right: fibromyalgia, asthma, anxiety and depression, rosacea, GERD [gastroesophageal reflux disease], Raynaud’s phenomenon. Those are the diagnosed things that I have. Oh, and hypothyroid, which feels like nothing—I take a pill for it, and it never bugs me anymore—but if it went untreated, it would not be nothing.

“In 1997, I was a superfit person, very athletic. I was taking good care of myself. And I was having gastrointestinal problems and pain, enough that I was going to the ER over and over again because I thought I was having a heart attack or a blood clot. I had dizzy spells and extreme pain and extreme fatigue.

“My primary-care physician, after sending me for every kind of test under the sun, sent me to a rheumatologist, who gave me the official diagnosis of fibromyalgia. Her advice to me was: ‘Take Advil, and get ready for a life of pain.’ And she gave me a brochure, like a little trifold brochure. I was terrified.

“I had a family member who recommended an out-of-state specialist, and that doctor gave me a bunch of treatments that made me much, much worse. She started me on three medications at the same time, and I had a horrible reaction. I was traveling on a work trip and hallucinating in my hotel room. I was like, ‘I am in Las Vegas, and I am hallucinating, and I am not cool with being Hunter S. Thompson right now.’

“Then my primary-care doctor referred me to the Rehabilitation Institute of Chicago, which has turned out to be the most wonderful thing. I had another rheumatologist there confirm the diagnosis and start me on a treatment plan that included physical therapy, medication, cognitive-behavioral therapy, dietary changes—a really comprehensive program.

“Getting diagnosed shone a light on other things I had been living with and not gotten diagnoses for, like the anxiety. And then the Raynaud’s phenomenon and the asthma showed up. I felt like every time I turned around I had a new symptom.

“When I first got diagnosed, there were no resources for me. I eventually decided to make the thing I wished I had, so I started a website about young women and chronic illness, and I called it Chronic Babe. I wanted to focus on the idea that we can still be beautiful and fun and sexy and vivacious even if we have chronic illness. That’s why it’s not called or whatever.

“I have a bunch of free downloads that people can grab. I do a weekly video called AWAP Wednesday; AWAP stands for As Well as Possible. I speak at blogging conferences and health care conferences, and I sometimes consult with health care companies. On the days that I’m in a lot of pain, I read e-mails from women who have read my site and who write to tell me about how their lives have changed and become better, and that’s the best thing.

“About my illnesses, I’ve heard everything from ‘Suck it up, get over it’ to ‘You just have to stay positive.’ I do actually believe being positive helps a lot, but I’ve had a lot of people think you just have to think it away. These people are well-meaning. I try very hard to remember that. But every once in a while, I just want to tell them to fuck off. I’ve been sick for almost 20 years. I know what I’m doing.”