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How to say “no” when someone keeps buggin’ you with questions about chronic illness #AWAPwednesday

Posted by on Feb 1, 2017 in ChronicBabe Basics, featured, friends and family, ranting, relationships, self care | 2 comments

Do you get tired of people asking you to justify self-care? Are you sick of answering probing questions about “what’s wrong now?” when you need to reschedule something? Me, too! Today I’ve got my favorite phrases for shutting down those conversations and moving into more productive territory: I think this is something we all deal with, so I came up with a bunch of tips to help you – adapt them to your particular needs. *AWAP = As Well As Possible Now it’s your turn: How do YOU handle conversations where people push back when you set boundaries? I want to know! Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 videos packed with practical advice, lots of humor, and bloopers. Lots of 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: Aw, thanks, but I’ve gotta wash my hair. Gee, that’s a nice invitation, but I have another commitment. Wow, you’re tenacious — thanks, but no thanks. Aw, hell no! Hi! I’m Jenni Grover Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK?   Today I want to talk to you about saying no to people when they won’t stop buggin’ you about your chronic illness (or limitations related to it). I was talking with a friend the other day, and she lives in a community where people really push and push if you say no — they demand an explanation. I think that’s baloney! Most of the time, when you say “no” to someone, you don’t owe them a detailed explanation. But people can really make us feel like we have to explain ourselves. Today, I’m sharing a few strategies I’ve learned through the years that shut down unwanted conversations. Let’s say you need to cancel a coffee date with a girlfriend because you’re having a flare-up. You call her and say “I’m having a flare-up, so I’m sorry but I need to reschedule.” She responds with: “But why? I thought you were fine yesterday?” You could: Go into a lengthy explanation of your unpredictable chronic illness and its daily attempts to steal your fun. (That can be a real downer for both of you!) You could get defensive, and end the call abruptly. (That could damage your friendship!) Or… You...

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What’s the worst/dumbest/most angering thing people say about your illness? #QOTW #CommunityCollab

Posted by on Sep 22, 2016 in community collab, Creativity, featured, friends and family, ranting, relationships | 11 comments

This week, I tried an experiment. Our Questions Of The Week (QOTW) feature has been awesome this summer, and I thought I’d try asking a question about something negative (I usually go for the positive, or at least neutral). And y’all went CRAZY! Here’s the entire original post; it has 62 comments! I’m so in awe of this community. We have to deal with so much, and so many of you posted things and got a ton of commiseration and support from others – I’m really proud of you all. I’m working on a PDF soon that will address potential answers (snarky or not) to all these comments and more. Here are some examples: In no particular order: a list of things that people say to us that make us want to go all HULK SMASH on them. Feel free to add more in the comments. And to share with folks so they learn what NOT to do. AND this is only a partial list of what people said on Facebook. For the full list, visit the original post, and feel free to comment there, too. I’ll start: “It could be worse” – someone said that to me yesterday and it made me so mad. Of course it could be worse! But as someone who’s so dang positive all the time, for one moment, can I just get a little support? And then you can help me find perspective again? But maybe NOT by saying “it could be worse”? “But you’re too young to be disabled or sick” (usually with “it’s such a shame” tacked on to it if in a wheelchair and therefore my M.E. is visible) – my age has nothing to do with it and it most definitely doesn’t make me feel any better to be reminded that I should be in work/in love etc because of my age. “Exercise more , that’ll get rid of it.” “I am so sorry you’ve chosen to tie yourself to Big Pharm. I wish you could have found alternative or holistic solutions. I mean, have you tried…” “Oh, I thought you must have been all better as I see you leaving the house”… ugh. Made me feel so frustrated because I know that is how SO MANY people think. “You miss too much work, maybe you should think about getting on disability.” (In reply, one babe said: “I did go on disability then was told by the same people, ‘you’re so lucky, how does it feel to be on permanent vacation.'” Then the original poster said this: “I’ve totally heard that when I return from a medical leave. I guess the trick is to learn to disregard those types...

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Block, ban, buh-bye: How to set boundaries in online chronic illness conversations #AWAPwednesday

Posted by on Jul 20, 2016 in ChronicBabe Basics, featured, friends and family, ranting, relationships | 0 comments

Are you sick of being irritated by Facebook? Tired of getting into online arguments with jerks? Me too! Today, I’m sharing my favorite tips for setting boundaries online so you can love social media again. Watch today’s video right now. *AWAP = As Well As Possible Now it’s your turn: How about you: Are you able to set boundaries? Do you ever ban or block folks on social media? Share your experience in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 100 videos packed with practical advice, lots of humor, and bloopers. Lots of 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! (Loose) Transcript: Hi! I’m Jenni Grover Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? There’s the denier: Your illness isn’t real. Your diagnosis isn’t accurate. Your symptoms are atypical so it can’t be (made-up disease name). There’s the comparer: At least you don’t have cancer. Or: Your pain may be a 5, but mine is one zillion! There’s the fixer: If you drink this or eat this or take this pill you’ll be fine. My aunt Mabel is cured!   And there’s the bully: You’re not really sick. You’re an asshole for sharing what works for you because it doesn’t work for everyone. you should (bleep) off. These folks are mostly well-meaning but let’s face it, they all suck to run into online. I mean, you’re there because you want help, you want to contribute, you don’t want to feel alone. These folks all get in the way. We will always have to learn how to cope with people who are different from us, and it’s a beautiful skill to learn to have meaningful dialogue. But when the dialogue is no longer meaningful, there are some easy tricks to minimize negative interactions. Quit. I don’t mean quit being online altogether, I mean quit the groups and forums where these folks thrive, and where moderators don’t step in to cultivate a positive community. There are a gajillion communities out there; you can find better ones. Block. If someone is still trolling you after you’ve given them a chance to change, block them. Yes, yes, people have the right to freedom of speech, but you have the right to stop listening. Cut them off. Ain’t nobody got time...

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8 Things People Say To Me About Crohn’s That Piss Me Off (And What You Can Say Differently)

Posted by on Jun 27, 2016 in acceptance, coping, featured, friends and family, guest author, pain, practicalities, ranting | 21 comments

Hi babes! My name is Alix and I’m a ChronicBabe summer intern. I was diagnosed with Crohn’s Disease when I was nine and have spent my life jumping from treatment to treatment and learning how to overcome the shame that accompanies inflammatory bowel disease (IBD) symptoms. Sometimes, even though usually with best intentions, friends of mine (or strangers) will ask me offensive or inappropriate questions about my Crohn’s. For all fellow ChronicBabes – this is for you to know you are not alone in this frustration. And for my friends and future strangers: tuck this away for reference.   1. WHAT I HEAR: My cousin’s friend has Crohn’s and went on X diet or Y medication. You should try it; I’m sure it will work for you. WHAT IT MEANS TO ME: You have the best intentions and you are trying to help but you don’t know anything about my medical history or my current diet regimen. You don’t understand how offensive it is to give treatment advice when you are not my doctor. WHAT YOU SHOULD SAY INSTEAD: My cousin’s friend has Crohn’s and finally found a diet-based treatment that worked for him/her. I know how hard it is to find something that works. I’m here if you want to vent.   2. WHAT I HEAR: My aunt had ulcerative colitis, too. WHAT IT MEANS TO ME: Either your aunt is dead or dealt with a different non-chronic illness but regardless it you haven’t done your research. Because ulcerative colitis and Crohn’s are lifelong illnesses it feels awful to hear you brush it off as something that can be cured. WHAT YOU SHOULD SAY INSTEAD: My aunt also has ulcerative colitis. (Or, in the case that she has passed away: My aunt also had ulcerative colitis. She passed away X years ago.) It’s an awful disease. I’m sorry.   3. WHAT I HEAR: You can’t eat gluten, lactose, or eggs? I totally understand. I’m a vegan and it’s so hard to find food sometimes. WHAT IT MEANS TO ME: My disease-based food restriction is equal in your mind to your lifestyle choice-based food restriction, which it is not. As nice as it is to try to sympathize with someone else’s food restrictions, it is beyond frustrating when someone who chose a lifestyle diet change tries to equate it with your disease taking all the foods you love away from you. WHAT YOU SHOULD SAY INSTEAD: You can’t eat gluten, lactose, or eggs? I don’t eat dairy or eggs either because I’m a vegan but I can’t imagine not being able to choose what to eat. It must be really hard.   4. WHAT I HEAR: You get such-and-such...

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Be Nice (in Conversations About Chronic Pain and Illness) #AWAPwednesday

Posted by on May 18, 2016 in activism, announcements, ChronicBabe Basics, featured, ranting, relationships | 19 comments

Last week, some folks decided to jump into a ChronicBabe Facebook conversation and be disrespectful to others. It sucked. The conversation was originally about a handful of stories about chronic illness and how relatable they are. Then one person declared that one of the women profiled was using an incorrect diagnosis, and that it was “pseudoscience.” I stepped in to stop the thread, asking folks to back off and be respectful. They didn’t; in fact, they stepped up their efforts. It was very upsetting for many people, and I eventually deleted the whole post to shut down the conversation. I hated doing this! The ChronicBabe community is built on a solid foundation of mutual respect and support, so it’s awful when some folks can’t see that. I understand that they were well-meaning, but no matter their intentions, they were being rude and disrespectful. So today’s video is a handful of thoughts I have about this event, and a reassurance that I will always protect ChronicBabe and keep it positively awesome. Even if the tone of the nation’s conversation about chronic pain and illness is trending negative, we don’t have to follow suit. I’m so eager to hear what you think! Watch today’s video, and then chime in below. *AWAP = As Well As Possible Now it’s your turn: Have you faced bullying or negative feedback online? How did you react? Were you able to steer the conversation toward a more productive outcome? I would love to know! Share your experience in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 100 videos packed with practical advice, lots of humor, and bloopers. Lots of 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!...

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Step Therapy Sucks, and I’m Tired of Being Quiet About it (AWAP Wednesday)

Posted by on Apr 20, 2016 in activism, Affordable Care Act, coping, depression, fears, featured, Health Care Reform, pain, ranting, resilience, suicide | 22 comments

This week’s video is different. I’m sharing a personal story about something I’ve been struggling with this year—Step Therapy—in hopes that you’ll relate… and that you’ll join me in fighting this awful practice: Step Therapy. So it’s a longer video, a more passionate stance, and a request. Please take some time to watch it all the way through… it comes from deep in my heart. *AWAP = As Well As Possible Now it’s your turn: Have you gone through Step Therapy or something similar? How did you fight back? What worked, and what didn’t? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than 10 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: Hi! I’m Jenni Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? Today’s AWAP Wednesday is a little different, my friends. I have a personal story to tell you, and a request I hope you’ll honor. Here we go… [Bumper] The past four months have been absolutely hellish here at ChronicBabe HQ, and I want to tell you why. I’ve been pretty quiet about the details, but today I want to explain it all to you—because I bet many of you are going through the same challenges. If my story helps you feel like you’re not alone—and if my outrage helps motivate you or anyone you know to advocate for folks like us—then this video could possibly change lives. I’ve been taking an FDA-approved fibromyalgia medication for many, many years, with great success. The change it made in my life was enormous. You know me as someone who, despite fibromyalgia and a host of other chronic conditions, is able to run her own business; maintain an active social life; be part of a committed romantic relationship; volunteer for both local efforts like my community garden, and national efforts like patient advocacy; and much more. Right? That’s the Jenni you know: spunky, lively, upbeat, even in the face of deep struggle. [Transition] This year, my new insurer took away my fibromyalgia medication through a process called Step Therapy. (link to us pain doc) For those who don’t know, Step Therapy is cost-saving policy...

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