An Interview with ChronicBabe Founder and Editor Jenni Prokopy

by Loolwa Khazzoom • August 12, 2011 • Writing and Editing Tips

Chronic fatigue syndrome, fibromyalgia, chronic pain, and a host of other conditions make working the 9-to-5 severely distressing if not impossible for disabled writers. But as a freelancer, you can work at home. In your PJs. With really, really bad hair. And nobody will notice. So says Jenni Prokopy, founder and editor of Here Jenni shares her story with us and offers tips on how disabled writers can work at home — and succeed big-time.

What was your life like before fibromyalgia?

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.

How did fibromyalgia change your life?

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.

How did suddenly having a disability affect your capacity to work?

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 five 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).

How did you turn your chronic condition into a package career — writing, speaking, consulting?

That was an accident, truly. I started 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.

Does your empowerment, through your work and in general, make people doubt how serious and debilitating your illness is?

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.

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”?

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.

How did your disability initially impact your ability to survive economically?

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.

What are some tips you have to offer freelance writers with disabilities, in terms of turning their disabilities into assets?

  • Learn to adapt. Change your schedule, your work patterns, your ergonomics, whatever it takes.
  • Know that change will be continuous: What works today might not work next month, so be flexible!
  • Hunt for ideal clients. Eat Ramen for a few weeks if it means you hold out for a great client — one who pays you $1 per word and sends the check 15 days after you invoice. Don’t settle for those $.10 a word folks who pay on publication six months later, if at all. This is not impossible, but it takes work to find those clients. Do it, and it will pay dividends for years to come.
  • Work on acceptance. If you don’t accept some limitations, you’ll be fighting your body; and you won’t win. I’m not talking about giving up. I’m talking about learning to love yourself as you are today.
  • Remember that as you learn to deal with disability and/or illness, you are strong. Every small success matters. Keep a journal or a diary of your successes so you can remind yourself of how terrific you are during hard times. And build a support network to help you, including other freelancers in your area. You can help each other with business tips and emotional support.

In what ways is freelance writing a disability-friendly profession?

The flexibility it affords is wonderful. You can work in your own space, at your pace, in your PJs, and still have a highly successful, lucrative career. If you want to, you can keep your limitations hidden. That’s the beauty of the internet.

In what ways is freelance writing especially challenging for people with disabilities?

Working alone can be very isolating, so you must reach out and build networks with others. Otherwise, it’s easy to feel lonely and unsupported. I can’t overstress the value of networking and staying in contact with others. If you’re undisciplined, it’s also easy to procrastinate, which is, well, you know. Not good.

Everyone’s disabilities are different, but what are some of your general tips for maximizing freelance work when disabled?

Develop a daily schedule and stick with it. Make time to care for yourself, hit the gym, meditate, whatever. Having a schedule helps you feel anchored. It also keeps work time feeling like work and personal time separate. That is key. Otherwise, you’ll feel like you need to work around the clock, or on the flip side, you will always choose to do the laundry instead of cold-calling potential clients. Find an accountability partner. This is ideally another freelancer, with whom you meet (physically or over the phone) on a regular basis, and compare notes: How often are you working? How much are you making? Any new clients? Keep each other accountable.

What are your tips for dealing with the uncertainty and fear around being a disabled freelance writer — ie, with no corporate safety net?

Ugh, that’s the hardest issue of all. Short answer: Marry someone so you have health insurance. Long answer: Think long and hard before going full-time freelance, because whether you’re disabled or not, it’s going to be scary. Build a supportive network you can lean on. Join an association or two, which sometimes offer group insurance programs and opportunities for networking.

The issues are really the same as with non-disabled freelancers: How will I find work? How will I juggle my schedule? The best advice I can offer is, know your craft, and approach freelancing like a business. Read books like The Well-Fed Writer by Peter Bowerman and don’t be afraid to get help from organizations like SCORE (an SBA division that helps entrepreneurs, especially sole proprietors).

How has ChronicBabe grown over the years, and how has its existence and growth changed your life?

We’ve gone from being a small blog to being a large web site, averaging 1,000 visitors a day and about 3,400 page views a day. We have almost 950 newsletter subscribers, and I’m branching out and doing lots of side projects. 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.

Please talk about the power of the internet, specifically blogging, and how it can be especially useful to writers with disabilities.

The most obvious benefit is connection: It’s so easy now to connect with other people and get help, support, have fun conversations, get the latest info on your rights or medical research…it’s wonderful. Use social networking sites like digg and to connect with others, and work that power!

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About Loolwa

Loolwa KhazzoomLoolwa Khazzoom has worked with leading media outlets, including The New York Times, CNN, Rolling Stone, and ABC News. In addition, she has published two books and has lectured at prestigious venues including Barnard Center for Research on Women, the Simon Wiesenthal Center, and Harvard University. Loolwa is passionate about health, music, dance, multiculturalism, and Judaism.

Holistic Media, Marketing, PR

Loolwa Khazzoom is a a public relations manager specializing in holistic media, holistic marketing, holistic public relations, and holistic promotions. Her services include branding and messaging development, image and communications management, website content development and optimization, social media management, traditional media campaign management, book development, and in-house writing and editing.

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