by Carolyn Thomas ♥ @HeartSisters
I first heard about the work of patient/advocate/blogger Jenni Grover Prokopy (pictured at left*) years ago when, coincidentally, we were each named by Our Bodies Ourselves of Boston as two of their 2009 Women’s Health Heroes. She describes her blog ChronicBabe.com as all about how to live a kick-ass life in spite of living with one or more chronic illnesses. Jenni has an up-close and personal relationship with this topic. First diagnosed with fibromyalgia 20 years ago, Jenni was terrified. She felt completely alone – medical resources were scarce, and none of her peers could relate to what she was going through.
“My life was turned upside down. I went from being a hard-charging, super-athletic chick to feeling so fatigued I couldn’t walk more than a couple blocks. Severe pain kept me from pursuing career opportunities and social activities. And within a couple years, I was diagnosed with other chronic conditions, too. I thought my life was over.”
But it wasn’t over. She explains: “As a young woman with multiple chronic illnesses, I get you.” Hold onto your hats, Heart Sisters – here’s my interview with the wonderful Jenni Grover Prokopy.
♥ CT: How do you motivate yourself despite living with a number of chronic illnesses, especially during your early months/years since launching a big project like ChronicBabe?
◊ JP: “The drive I have to help people craft incredible lives beyond illness is what fuels me. It’s a personal quest, because I know what it’s like to feel like your life is over – and how great it feels to take the reins again! When I founded ChronicBabe in 2005, it was a side gig – really a hobby – so I took it slow and built it with a lot of joy. Now that I’ve turned it into the main part of my writing/consulting/speaking practice, I still approach it with joy – but also with more ferocity and intention, because a girl’s gotta make a living!
“But even I have days when my motivation flags, or when depression rears its ugly head and I don’t feel like I’m worth the work. On those days, I draw my support community close; I may post on Facebook asking for supportive nudges, or text my best friend, or ask my fiancé to give me props. I think of my nieces and my friends’ kids (my family of choice) and how I want to create a world for them that accepts and loves all people despite illness or disability.
“And when all else fails, a good 10-minute dance party in my living room can really help! I have some go-to songs that always lift me up enough to get back to the computer, or on the phone, or whatever the next step is in teaching people about how to be ChronicBabes. Also, I made a video about staying motivated when you live with chronic illness.”
♥ CT: The work you do to support others living with chronic illness is pretty darned amazing, Jenni, but all of it must take a lot of time and energy, especially when you’re feeling ill. Did you ever feel like quitting because of these demands? How did you overcome that urge?
◊ JP: “Yes! I’ve definitely felt like quitting. During very lean economic times, it’s been hard to justify working on this project, as it creates much less income than other work I’ve done (in marketing and public relations). But then I think about how I felt as a 25-year-old woman whose career was just starting to take off when I got sick: helpless, hopeless, alone. I needed ChronicBabe (or something like it) all those years ago, but nothing like it existed! And today, so many people need ChronicBabe – I’ve built a huge audience, and I never want to take ChronicBabe away from them. So that keeps me very motivated to make this project a success.
“Creating a successful Kickstarter fundraising site for my book ‘ChronicBabe 101: How to Craft an Incredible Life Beyond Illness’ helped show me how much people support my efforts, and that also supported me financially for some portion of the writing experience.”
♥ CT: For many of us living with a chronic illness, asking others to help us can be tough. Tell us some practical ways you have managed to ask for help when you need it.
◊ JP: “Let’s take my fiancé Joe as an example. When we started dating, he knew I was sick – but he didn’t know exactly what that could look like.
At first, I was scared to ask him for help with things. But over time, we learned to balance responsibilities: if I steer the cart at the grocery store and make sure our list is up to date, he’ll load the heavy items in and out of our car. If I cook dinner, he’ll jump in and do dishes, and if I’m too flared up to do other chores, he steps in. We don’t keep track of what each other does; we function as a team, doing the most we can, when we can. And we make sure to ask each other for help.
“I think it works so well because it’s not just me asking him for help – I’ve made it clear that he should ask me for an assist when he needs it. So we don’t feel that imbalance that sometimes gets in the way of people asking for help.
“My community garden plot is another great example of a really simple way to ask for help. When anyone is out of town (including me), they can post little signs with a raindrop on them near their plot to indicate neighbors should water for them. It’s a simple way to indicate you need help, and it works well. So sometimes I also ‘post a little sign’ when I need help, like I may shoot an Instagram photo with a caption that explains I’m flared up and accepting dirty jokes or cute puppy pictures.
“It helps when we are specific about the help we need, and when we show appreciation for any help given. It seems obvious, but sometimes when we’re really unwell, we can forget these basics. I created a video about this to teach a few methods for asking for help.”
♥ CT: In my own experience as a heart patient, people often assume heart patients are “not that sick” because heart disease is largely an invisible illness. How do YOU like to respond when others have said things to you like “But you look so good!” ?
◊ JP: “Sometimes, I put on an evil grin, wring my hands together, and say something like ‘Mwa ha ha ha ha… my evil plan to fool you is working!’ A little goofball humour can diffuse a situation that might otherwise leave me feeling insulted, or my experience dismissed.
“Sometimes, I simply say ‘Thank you!’ and move on, because I don’t have the energy to be an advocate that day.
“Sometimes, I say ‘That’s really nice, and DANG you know I look good, girl, but… I really do feel awful today and could use some help carrying this heavy stack of books – could you help?’ There are moments when it’s important to push back and explain how your pain or illness is impacting you, and ask for help if you need it.
“Many people who’ve never been really sick don’t “get it” that we can look fabulous but feel cruddy. So I try to teach people when I can. But I’m not obligated to teach everyone all the time about my reality, and I pick and choose the moments when I go into ‘advocate’ mode.
“In fact, I made a video about how to talk to people who don’t believe you’re sick because you’re so gorgeous. I also created a video encouraging women to ‘rock their look‘ even if they’re sick; for me, that action helps me feel more ‘put-together’ and human.”
Jenni Prokopy’s site ChronicBabe.com features an online forum of almost 3,000 other women living with chronic illness who support each other with grace and creativity, plus over 100 insightful videos on her own YouTube channel with titles like “Embrace The Suck of Chronic Illness”, all part of AWAP Wednesday, which stands for “as well as possible”. You can also sign up to receive her free weekly newsletter packed with tips, inspiration – and oh, did I mention? – humour.
Finally, as Jenni would say: “Be AWAP!”
* That lovely photo of Jenni is from Elizabeth McQuern Photography
Q: What has helped you to live a kick-ass life in spite of living with chronic illness?
- Invisible Illness – seeing what others can’t see
- Oneupmanship: you think YOU have pain?
- Let’s all play Chronic Illness Bingo!
- “But you don’t look sick!”
- Six personality coping patterns that influence how you handle heart disease
8 thoughts on “ChronicBabe: living a kick-ass life despite chronic illness”
Reblogged this on Her Headache and commented:
It’s not easy. Pain is invisible. Life must, to a certain extent, go on.
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Life does, to every extent, go on!
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Thank you so much, y’all! I’m honored to be featured here and I love hearing your stories, too.
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My pleasure, Jenni! Keep up the great work, and good luck with your upcoming Chronic Babe book!
I have several chronic illnesses as well – the most recent of which is trigeminal neuralgia, which manifests itself in painful, shock-like jolts up my jaw. I actually had two teeth extracted before it was correctly diagnosed.
Few people are able to conceive of how painful it is. I’m a social worker and speaking, both in person and over the phone, is a large part of my job which I thought was over. Two medications brought it largely under control and I was fortunate enough to find a neurologist who prescribed medical marijuana for flare-ups.
A friend of mine asked me if the medical marijuana was helping my migraines and I reminded her (not for the first time) that it was meant to help flare-ups of the trigeminal neuralgia. She laughed and said “Oh my God, well you can’t expect me to keep all your illnesses straight – you have so many of them.” This also was not the first time she has said this. One time we were having dinner together and I started to bring up an issue I was having with my pulmonologist (I have adult-onset asthma) and she shut me down saying, “I don’t want to encourage you.” We go back a long way and I value our friendship. I’ve only developed these chronic illnesses not even two years ago.
She is not the only friend in my life that acts this way – I just used her as an example. I also have Prinzmetals Angina and I’m terrified that I’m going to have a spasm while I’m with one of them. I don’t know what to do.
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Thanks for sharing your story here, Andrea. What you describe isn’t uncommon, especially when our friends are not used to these new health concerns. What they want, and need, is to have the ‘old you’ back again from two years ago. They may suffer from what’s known as “healthy privilege“. But this works both ways: we have to carefully decide who we confide in about our health concerns, and how much to say. For example, your friend who shuts you down by saying “I don’t want to encourage you!” (yikes!) is telling you very clearly a lot about herself and her ability to be compassionate and caring. You may value this friendship, but you cannot expect her to suddenly become a different person. And it’s bad enough to have Prinzmetal’s without worrying about what your friends might think if you have an attack. I hope you will find a support group of like-minded people to lean on who “get” what you’re going through. There’s nothing like becoming ill to find out who your real friends truly are.
Thanks once again Carolyn. This blog hit the spot today. I write on my website about all the strategies to use living with chronic pain (fibromyalgia- which I now call ‘central sensitization’) and yet it is difficult to practice what I preach. I needed this boost from someone else after a pain filled night.
I remember well we two Canadians receiving that distinction from Our Bodies Ourselves in 2009. If it hadn’t happened, we might never have met and I would not have had the ‘heart smart help’ I receive from your website!
Living with fibromyalgia/central sensitization and heart disease presents many challenges, but I/we have to keep on keeping on!
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Thanks so much, Barbara. You’re so right – it’s hard to practice what we preach, no matter how wise our coping strategies might be!
I remember that the first thing I did when I first learned about my Women’s Health Heroes award was to look up every other woman on that 2009 list, which is of course how I learned about your important work – and touched base immediately, from one coast of Canada to the other. I hope that someday we will actually have the chance to meet in real life!!