She is the founding editor of one of the most informative and impressive websites on chronic illness — including but not limited to chronic pain. Not only is her site geared toward young women like me, but it comes in a candy-striped pink package! Rock on. In this interview, ChronicBabe’s Jenni Prokopy talks shop about living and working with chronic illness.
Loolwa Khazzoom: What was your life like before fibromyalgia?
Jenni Prokopy: Before my diagnosis, I was athletic and very active. As a full-time magazine editor, I worked long hours and traveled often; and in my free time, I produced a ‘zine, Buffalo Speedway, that was fairly popular.
It wasn’t uncommon for me to pull all-nighters, and I had plans to write a novel and become a globe-trotting investigative journalist. Right around the time of my diagnosis, I was doing some non-profit work with an agency that serves people with disabilities, so luckily I had access to information about my rights career-wise.
LK: How did fibromyalgia change your life?
JP: My fibromyalgia diagnosis rocked me to the core. One doctor told me to “take Advil and get ready for a life of pain.” It was an awful time. I felt incredibly confused, alone with my illness, and unsupported. Coincidentally I had just broken up a long-term relationship, so that compounded my fears and anxiety.
Those first few months were wretched. I found myself grasping at anything that felt “normal” and forcing myself to stay highly active; I refused to accept that I needed to slow down a little.
LK: How did suddenly having a disability affect your capacity to work?
JP: I continued to work a full-time job for years after my diagnosis. At one job, my boss wasn’t very accommodating. Any time I had to take time off of work for a doctor visit or test, she would make me take a half day, even if I only needed an hour. Soon all my sick leave was gone and I had to use unpaid FMLA (Family Medical & Leave Act) time.
A job change resulted in a much more understanding boss, who gave me lots of flexibility. But I worked much more and traveled extensively, so I still struggled to manage my symptoms. I still couldn’t fully accept the reality of my limitations.
When I married, I took advantage of the opportunity to join my husband’s insurance program and jumped ship to start my freelance writing career. That was six years ago! The flexibility schedule-wise was very attractive, and I wanted more say over my income; I knew I could make much more money freelancing (eventually).
LK: How did you turn your chronic condition into a package career — writing, speaking, consulting?
JP: That was an accident, truly. I started ChronicBabe.com as a blog, a hobby – a way to share my experiences with other young women. When I was diagnosed, I felt alone and confused, and the online resources I found sucked, frankly, so my goal was to share my perspective with others like me so they wouldn’t feel as alone as I did. This came about after years of working with multiple doctors, and coming to a place of acceptance regarding my illness.
The reaction to the site launch was swift and strong, and through work with a business coach I realized I wanted to shift my career focus from just freelance writing (about construction) to writing, speaking, consulting — all around health issues.
Now I run the web site; I offer freelance writing and editing for health care organizations; I speak to groups about healthy living despite chronic illness; and I have a few more tricks up my sleeve. My clients are spread across the U.S.
LK: Does your empowerment, through your work and in general, make people doubt how serious and debilitating your illness is?
JP: Yes. A colleague told me recently, “You seem fine all the time, so I forget you’re sick.” In some senses, that’s great; I don’t want people pitying me or viewing me as “damaged goods.” On the other hand, when I do feel bad, people are sometimes shocked and respond in an incredulous manner. They have a hard time imagining that I can be disabled and still look “normal.”
It’s a huge issue in the world of “invisible illness”: Unless you look awful, people don’t always believe you’re as bad off as you tell them. I don’t know how to change that, except to keep living my life with authenticity (honesty about my condition) and hope that people see me for who I am, in the whole, and that they remember it the next time they meet someone who has chronic illness. I can still be a hottie and feel like crud; they’re not mutually exclusive.
LK: Because you’re so empowered and out there in the world, do you ever get faced with reactions of, “Oh she’s just doing this to get attention”?
JP: Again, yes. In fact, I once almost lost a life-long relationship when a relative told me she believed I had created ChronicBabe just because I was needy and wanted attention. Thankfully, we’ve resolved that “difference of opinion,” but the residuals stick with me.
I’m very aware that some people think I just want attention, and at this point, I do want some attention, so that people see there are women out there who are doing their best, in spite of being dealt a bad hand. But I don’t need attention personally. I have a wonderful husband and an excellent circle of friends and family who are highly supportive.
LK: How did your disability initially impact your ability to survive economically?
JP: At first, I worried I would have to stop working. But working with the folks at the Rehabilitation Institute of Chicago, I’ve learned so many strategies about coping that I know that no matter how bad my symptoms are, I will always find a way to work.
It does make things hard sometimes, though. Now my goal is to make ChronicBabe into a money-maker so I can continue to do this positive work and live comfortably. It’s a challenge, but as with building a freelance writing career, it just requires steady work; and I know it will pay off.
LK: How has ChronicBabe grown over the years, and how has its existence and growth changed your life?
JP: We’ve gone from being a small blog to being a large web site, with thousands of visitors and page views a day. Emotionally, it’s been incredible. I feel more supported than ever, because I have fans. (That’s so weird!) I love my work, so I’m enjoying it more than ever. But I work harder than I ever have, too, because I’m passionate about it.
Being so open about my illness makes me more accountable for my self-care and other actions, as well, which I think is good. If I write one day about reaching out for help, and then the next day I’m laying on the couch feeling lonely and sorry for myself, I’m a hypocrite; so I’m actually much better at caring for myself now. Because I know more people are paying attention and are going to call me on my b.s.
In 1997, at the age of 25, Jenni Prokopy was diagnosed with fibromyalgia. Soon after came diagnoses of asthma, anxiety, Raynaud’s phenomenon and GERD. She created ChronicBabe.com in 2005, to provide an online community for younger women with chronic health issues who want to be at their best.