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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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The Problem with Pain: People Are Afraid. (On Activist Fatigue, and Why We Must Keep Talking)

Posted by on Oct 16, 2014 in activism, featured, pain, ranting | 6 comments

It’s not often that I read an article that makes me burst into tears. And maybe it’s because I’ve been in constant, intense pain for the last few days, or because I’m hormonal, or perhaps I’m just being HYSTERICAL… but this piece in Vox about new research into objective pain testing using functional MRI (fMRI) made my eyes squirt. Raise your hand if you have chronic pain Ah, yes, so many of you. You’re in good company: The American Academy of Pain Medicine (AAPM) estimates that 100 million Americans, and approximately 1.5 billion people worldwide, live with chronic pain. So many of us have had to circle a little face in the traditional pain scale, a row of dorky little faces that propose to indicate how bad we’re feeling. If you’ve ever sat in a doctor’s office, sobbing, wracked with pain, and been handed a slip of paper with this pain scale, no one would blame you for crumpling it up and tossing it aside. Six little faces are not enough to help us indicate the extent of our pain, or the extent to which it robs us of normalcy. (If you haven’t seen the alternate pain scale at Hyperbole and a Half, stop reading this blog post now and take a peek.) So the idea of more objective testing—brain scans, science, techmology!—is very intriguing. Especially for women like moi (I mean, all women, and especially those of color), because as the Vox article reminds us, women are less likely to get pain treatment they need than men, and people of color receive less-effective treatment as well. But FEAR!!! The thing that made me cry as I read the Vox piece was the description of a pain doctor who is identified as a vocal opponent of the fMRI testing concept. He cites the possibility that an inconclusive or negative test could be used against a patient who could be feeling pain that isn’t picked up on the scan. And while I agree, that would suck, it’s that kind of fear that holds us back from progress in the pain research and pain management fields. Why focus on a potential negative outcome, when we could focus on the potential massive positive outcome? Don’t get me started on pain medication I lost track long ago of how many conversations (sometimes arguments) I’ve had with folks about medication for pain management. People without chronic pain are the biggest culprits of myth perpetuation, in my experience, proclaiming that all pain medications are addictive and that we should ban them. (Yes! I’ve heard this many times in conversations, even with friends.) It’s true, as Vox points out (as does AAPM), that prescription pain medications are responsible for many deaths in this...

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What I did today to help make living with “invisible” illness more visible. And: What you can do, too.

Posted by on Apr 3, 2014 in activism, Affordable Care Act, featured, Health Care Reform | 14 comments

Today I had the unique experience of sitting with a U.S. Census Bureau employee, participating in the SIPP survey—the Survey of Income and Program Participation. It wasn’t something I wanted to do, but it’s something I needed  to do because I was called on as a U.S. citizen to participate in this four-year-long project. The answers I provide help the Census Bureau analyze how we use our income to pay for things like utilities and food; how we spend our money on healthcare; how illness can impact our ability to work; and many more important questions. Emotional exhaustion. The two-hour interview left me emotionally exhausted. While I’m very proud of my successful business and enjoyed sharing details about some of the highest income I’ve ever earned (2013 ROCKED professionally!), it was very difficult to outline in detail what I spend on medical expenses, and how my health impacts my earning abilities. As I sat across from the surveyor, I checked my records and confirmed that I had more than 75 doctor appointments last year. That the amount I spent out of pocket for healthcare costs was more than 20% of my net income. That while it was typical for me (a self-employed gal) to spend 50 hours a week working, I also had periods at least once a week when I couldn’t get out of bed or work for half a day. The big picture? That I work more hours than most people I know; that I pay more for healthcare than most people I’m friends with; that while my income was high last year, I still struggled to make it because of high debt that I’m slowly chipping away at; that I spend time every week not being able to work; that I sometimes need help doing basic household tasks like laundry and shopping… This is a difficult thing to look at. I reached out for support. These are traits, experiences, that I move in and out of every day. But it’s not often that I summarize them for a complete stranger in such stark, black-and-white statistics. And it made me extremely sad. I texted my boyfriend, who was amazeballs. (I hope you’re seeking out strong sources of support in your life, too!) He had helpful things to say, mainly that by talking frankly about this experience, I am helping to make it less invisible. By telling a complete story about how chronic illness impacts us, we help others understand its reality. And we help diminish the stigma. The Census Bureau employee seemed surprised that I had times in my day when I couldn’t perform normal tasks, or that I worked so many hours despite needing so much downtime; that I...

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