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You Know Someone With Fibromyalgia. Promise.

Posted by on May 12, 2015 in activism, announcements, featured | 15 comments

Every year on May 12, thousands upon thousands of people and organizations honor National Fibromyalgia Awareness Day. We wear purple, and we write blog posts about what it’s like to experience the condition, and we talk about advocacy efforts. And every year I feel like that effort falls flat. It’s nice to have awareness, but often, it’s just a blip on the radar. Sure, now you’re reminded fibromyalgia exists. But what’s next? It’s just one of hundreds of national health observances that seem to come and go without much impact. This year, I’m trying something different. Something simple. Fibromyalgia impacts an estimated 10 million people in the U.S., and about 3%-5% of the world’s population. Odds are very, very good that you know someone with fibromyalgia, whether they’re vocal about it or not. I am one of those people. If you think you don’t know someone with fibromyalgia, hold up—you know me, right? Even just a little bit? Well, I have fibromyalgia. So let all your preconceptions about the condition and about those of us who have it fall away… now’s your chance to REALLY understand what it means to live with all the symptoms we endure. Ask me anything. Ask any other person you know with fibromyalgia what their experience is like. Ask how you can help. Ask where you can learn more. Ask how you can join the movement for more research. Ask how you can help remove the stigma. Seriously: Ask. Post a question in the comments below, send me an email, text me, post a question on Instagram… anything. Just ask. The more we know about the experience, the more normalized it becomes… and the easier it is for those of us living with fibromyalgia to ask for—and receive—the accommodations we need and deserve. And when we get that understanding, compassion and accommodation, we’re able to be more active, productive members of society. We thrive. We give back. I am living proof of that, y’all. Today’s the day: Ask. Heck, ask me ANY day and I’ll tell you what you want to know. And those of you with fibro? Tell. Today’s your day! (Heck, any day is your day!) Share your experience. Offer to answer questions. Post links to helpful organizations like Fibro Center, U.S. Pain Foundation, the National Fibromyalgia Association and the National Fibromyalgia & Chronic Pain Association. Ask folks to sign the petition for a cure. Be a resource. That’s it… super simple. And let’s make awareness of fibromyalgia and its impacts a year-round thing,...

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AWAP Wednesday: Sometimes, You Need to Shut Up.

Posted by on May 6, 2015 in activism, featured, ranting, relationships | 60 comments

Today’s AWAP Wednesday video is not based on a question I received. It’s based on my reaction to spending so much time in the chronic illness/chronic pain community. We like to tell our stories. A lot. And I love that, most of the time. Our stories are powerful: They help us connect with others, they help us get something off our chests, they help us turn friends and strangers into advocates. That is… if we are thoughtful about when and how we tell our stories. On the flip side, when we tell the same agonizing story over and over about our chronic illness/chronic pain experience, it’s exhausting and non-productive for everyone—including ourselves. So today, in the most loving way possible, I’m asking you to shut up. (And I’ll try to heed my own advice, too!) Watch today’s video, in which I explain why we *sometimes* must simply shut up: *AWAP = As Well As Possible Now it’s your turn: Have you been thoughtful about how you tell your story, and to whom? Do you think I’m a jerk for suggesting we all need to shut up sometimes? I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Rough) Transcript: Today’s message is pretty simple, and pretty blunt. So I want you to hear it from me knowing I’m sending it to you with the most humility, and irreverence, and love, and joy, and compassion, and loving-kindness that I can. So with that being said, here is the theme for today’s video: Shut up. Sometimes, we all just need to shut up. I hope you’ll understand I say that to you with a lot of care and humor, but for real: sometimes we need to shut up. There are a couple reasons why I think those of us with chronic illness or chronic pain sometimes need to shut up. Reason #1: We’re telling ourselves the same bummer story over and over Sometimes we talk too much, in our brains, to ourselves, all the time, about our illness. And about how much we’re suffering and about how hard things are. Sometimes we’re repeating this tape over and over and over again, and drilling in HOW HARD IT IS to live with chronic illness… and that is not healthy. If we spend all our time focusing on the negative, we are going to feel like crap. We’re going to feel EVEN WORSE than we...

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AWAP Wednesday: How Much Should We Reveal?

Posted by on Apr 29, 2015 in acceptance, activism, ChronicBabe Basics, featured, relationships, self care | 27 comments

*AWAP = As Well As Possible Yesterday I did a kinda crazy thing. Maybe it won’t seem kinda crazy to you, but in hindsight, it was a barrier-breaking moment for me. I alluded publicly to the fact that I have a vagina. I know! Crazy! Before you get all up in arms, I KNOW it’s not crazy. It’s just that despite my openness about so much of my ChronicBabe journey, I don’t frequently mention anything to do with my girl parts. It’s not that I’m ashamed, or embarrassed, or shy… it’s just never come up. Until yesterday, when I posted this selfie:   (It’s kind of hard to read, but my caption said this: “that thing when you get your second gyne exam in two days and this time, you manage to get ultrasound gel all over your sweater. derp! #HospitalGlam #sicklookslikeme #examroomselfie #ChronicBabe” I like to poke fun at a lot of things. Like being sick, for one. If I didn’t laugh about this stuff all the time, I think I’d go crazy. I started posting pics with the #examroomselfie hashtag last year because it was fun to update people and be goofy at the same time. Then Karolyn Gehrig upped the game with her #HospitalGlam hashtag and I was super-excited — tons of gorgeous sick chicks (and dudes) started showing up in my feed. The more of us open up like this, the more “normalized” life as a ChronicBabe becomes. Just, usually, you know, when I post an #examroomselfie at the gynecologist, I don’t usually specify my location. I’m not sure why, really, I’ve just felt like it was too much information. Too intimate. Too vulnerable. And totally not fun. I don’t know what got into me yesterday. (Oh, actually I do, but that’s WAY too much information… haha see what I did there? A joke! Haha! Sigh.) One minute I was taking this goofy pic, the next I was uploading it to the world, revealing the fact that I’m having some probs in my girl parts. Which SO MANY of us do. After all, most of us own these parts. And most of us have issues at some point or another. And while I’ve watched babes with bags show off their pouches; while I’ve watched paralyzed babes show off their feeding tubes; while I’ve watched diabetic pals show off their glucose injection sites… I’ve somehow thought it was unladylike, indecorous to mention if I have a problem with my girl parts. Which just goes to show there’s always room to learn. As a ChronicBabe… as THE ChronicBabe… I believe it’s my responsibility to continue to be open, honest and willing to share much of my experience with the world, with...

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AWAP Wednesday: 5 Ways to Respond to Someone Who Doesn’t Believe You’re Sick

Posted by on Mar 4, 2015 in activism, ChronicBabe Basics, coping, featured, ranting, relationships | 32 comments

I’ve talked about this before, and it seems I’ll never run out of reasons to talk about it again… because I keep running into naysayers and folks who don’t believe I can be sick. I’m flattered that they think I’m too dang cute to be a sicko, but also… super-irritated. Why can’t folks just take me at my word when I talk about invisible illness, as they would with so many other issues? “You can’t process these conversations as if you’re trying to change someone’s mind. You can only manage your own beliefs and behaviors. Once you’ve got that down, naysayers are much easier to talk to about illness.” More than 100 million people in the U.S. alone live with invisible illness, so it’s about time we got comfortable speaking up in conversations with naysayers. We don’t have to be jerks; in fact, I advocate the opposite! Today, I’ve gathered a bunch of approaches I use day to day to talk with folks who don’t believe I’m as sick as I say I am… Watch now for my top 5 tips: *AWAP = As Well As Possible Now it’s your turn: How do you respond to naysayers, doubters and jerks? Fill me in—I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Rough) Transcript: Naysayers abound. There will always be people who question your experience – that’s just human nature. Unfortunately, those of us with invisible illness get this treatment a lot. (And you’re in good company; more than 100 million people in the U.S. alone live with invisible illness!) Many people simply can’t imagine our experience unless they’ve been in our shoes. It’s unfortunate, but if we dwell on it, it just brings us down… and who wants that? If there is anyone in your life who just won’t let up, who always questions your experience, then I encourage you to limit contact with them as much as possible. If you have someone who continually doubts you or calls into question your experience, you don’t need them. Boot em! Here are a few strategies I use for when people around me are being naysayers, or doubting me, or reminding me that some people think my illness isn’t real: The Quick Change This involves a quick change of subject. It requires that you do NOT try to change their minds. Instead, turn the tables. You might try answering a comment...

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AWAP Wednesday: Can I Get A Little Respect?

Posted by on Feb 4, 2015 in acceptance, activism, ChronicBabe Basics, featured, ranting | 58 comments

Instead of answering one of your AWAP* Wednesday questions today, I want to offer a little PSA and a call-to-action. It’s about the value and necessity of respect for others in our chronic illness community: *AWAP = As Well As Possible Now it’s your turn: Thanks for listening today, babes. Thanks for speaking up. If you’re with me on this, I would love to hear your thoughts in the comments below. Heck, even if you’re NOT with me, I would still love to hear your thoughts… we don’t have to always agree to respect each other. Next week, I’ll get back to answering AWAP Wednesday questions. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Rough) Transcript: A funny thing happened to me recently. I met another woman with invisible chronic illness, one that—like fibromyalgia—is often called into question by non-sick folks and even medical professionals. We were having a pleasant conversation, and I was enjoying the fellowship of another ChronicBabe. Then she said something that shocked me: “I’m surprised you have fibromyalgia! I would never have guessed that from the way you look.” I almost snarfed my tea. After a moment, I regained my composure. “Well, isn’t that the reason we do the advocacy work we do? Because so many of us have invisible chronic illness and can’t get the respect we need and deserve?” But you don’t look sick. She said the one thing I would NEVER expect another person with invisible illness to say: But you don’t look sick. I haven’t been able to stop thinking about this interaction. It’s been my assumption for many years now that all of us within the invisible illness community understand and respect each other for sharing this same experience. Since I first got sick almost 20 years ago, I’ve heard variations on but you don’t look sick from tons of people—but almost never from another person with invisible illness. The idea that we have to look sick to be sick is wrong. This idea keeps thousands upon thousands of sick folk from getting the respect they need and deserve from friends, family, co-workers and others. Often, this idea keeps us from getting the medical care we need and deserve from otherwise well-meaning health care providers, who for whatever reason can’t discern or believe the intensity of our pain and other symptoms that don’t present visually. Respect each other. All of us within the invisible illness community—and there are over 100 million of...

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AWAP Wednesday: Is Chronic Illness Actually a Good Thing?

Posted by on Jan 21, 2015 in acceptance, activism, ChronicBabe Basics, featured, spirituality | 44 comments

Today’s AWAP* question comes from a fellow ChronicBabe, who gets right to the heart of the matter: “I guess, to put it as simply as I can right now, I’m “being” with these questions: Is illness inherently bad? Is being ill inherently negative? I’ve been sick with ME/CFIDS long enough to know the thing is a dragon, and that it is my duty to protect everyone around me from its terrible, flaming power of destruction and terror. “But what if we (as ChronicBabes, and as a broader society) could turn our understanding of illness on its head? What if illness could be good?  Not that it doesn’t change, ebb and flow, like life. But if one believes life is essentially good, and illness is a part of life, then, is it possible that illness, too, is good? Is it possible to live this belief?  Maybe I only need to believe in this possibility in order to keep working to make things as good as they can be, in order to give my life something it otherwise fundamentally lacks: purpose. “I need to believe my life is not a waste, or a list of losses. But as I study various spiritual tracks, (and also, the more I connect with my body as a friend and beautiful being that needs my care), I wonder if much of my existential pain comes from the outside world, and my own ego. As I meditate, I keep finding myself momentarily at peace, believing in the beauty, the wonder, the strangeness, the joy of illness. “The joy of illness? Maybe it is not a sustainable joy, a lasting peace, but if it can be experienced in one moment, why not in the next? I would be so curious to know if any other ChronicBabes wonder about this. Because if we could live in the bliss of this radical truth—the positive nature of illness—it could change everything. Couldn’t it?” I am not feeling well at all today, so for me, AWAP means not filming a video, but instead presenting you with a quick chat accompanied by some pretty pictures to view while considering this topic. Enjoy: *AWAP = As Well As Possible I don’t think it’s possible for us to get any deeper than this question. It goes to the heart of our experience of life: Do we choose to focus on the negative, or do we choose to focus on the positive? Over the years, I’ve caught a lot of flack from folks who think I look too positively at the illness experience. People have said, “Jenni, you ask people to look on the bright side, but there is no bright side” or “Jenni, how can...

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