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How to respond when someone says “this is what you have to look forward to when you’re old”

Posted by on Aug 30, 2017 in activism, ChronicBabe Basics, featured, relationships | 15 comments

Yesterday, I was relaxing in the hot tub at my gym. I had just completed an hour of strenuous water movement class, and my body was like WHAT ARE YOU DOING TO ME…so the hot tub was an essential relaxing moment. The usual gang of fellow classmates was there—women, like me, who take the class because it’s accessible despite physical limitations. What you need to know is, everyone else in the hot tub was a solid 20 years older than me. And that’s all good. We’re all in it together. (I mean, literally in it!) But yesterday, a woman I’ve never spoken with before turned away from a group conversation about chronic pain and illness and said to me: “This is what you have to look forward to when you’re old.” Sigh. I hate these conversations. I’m not sure what the goal is of someone who says that. Are they trying to freak me out about my future? Sorry, babe, I’m not that easily scared. Are they feeling awkward because they’re leaving me out of a group conversation, and somehow trying to explain why? But in a backhanded way? I don’t know. I can’t understand the benefit of ever saying that phrase to someone. I know I look younger than I am; no one ever guesses I’m in my mid-40s. And I’m the young one in the class usually, so I stick out. But still: There’s no need to single me out. An awkward conversation Anyway, I took a breath and started my usual spiel: “Actually, I’ve had chronic pain and illness since I was 25, so your conversation is familiar to me. No need to explain.” Her: “But you’re so young! You were diagnosed when you were 25? Oh, that’s so horrible! I’m so sorry.” Me: “Thanks, but no need for sorries. I’ve worked it out and actually made a life for myself in spite of it, and I’m proud of my work.” I described ChronicBabe, which she seemed to find fascinating: Her: “Oh, you’ve really made lemonade out of lemons! Good for you! But I’m so sorry.” Me: “Really, no sorries necessary. By the way, what’s your name?” We introduced ourselves, and then I said: “Of course, you can always just call me ChronicBabe if you forget my name.” Her: “Oh, no, I could never.” She looked down. She got uncomfortable. She started to climb out of the hot tub.  Me: “Okay, nice talking to you. Have a great day!” Her: Grumble grumble awkwardly departs. Is it generational? Sigh. I think maybe it is; I talked to my physical therapist about it today, and she reminded me that people a couple decades older than me were raised to...

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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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How to be a great significant other to a person with illness #AWAPwednesday

Posted by on Nov 30, 2016 in caregivers, ChronicBabe Basics, featured, relationships | 14 comments

Hey, sick chick! So glad you found this video. Now, press pause and go get your significant other, or your SO. I’ll wait. OK, great! Hi there. I’m so excited to talk to BOTH of you. This week’s video is the last of 2016, and it’s for all those folks who love us ChronicBabes: husbands, wives, spouses, partners, girlfriends, boyfriends, lovers… this video is packed with advice for how to be a great significant other (SO) to a woman with chronic illness. I hope you find the advice helpful, and I encourage you share this video with anyone who might benefit: *AWAP = As Well As Possible Now it’s your turn: How do YOU support your ChronicBabe? How does your SO support you, babelicious? I want to hear from both of you! 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! (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? Checking in Everyone gets a little embarrassed about feeling sick and can feel afraid to burden friends and family with problems. That’s where you come in. Once a day, you should check in with your SO and ask how she’s doing and if there’s anything you can do to help. Sometimes she’s really, really hoping for some help but won’t ask for it because she doesn’t want to create extra work for you. Checking in is a good way to let her know you are always willing to make the time to help her and show that you’re there for her. Listening Sometimes we just need a shoulder to cry on. Seriously. It’s understandable that you’ll want to problem-solve, because you hate to see your SO in pain or sad. But try not to assume that’s always the best move. When your SO brings up a tough subject or challenge, consider asking this question: “How can I help you right now?” She might say “I just need you to listen so I can get this off my chest.” There will be time for problem-solving later. Be a battle buddy I recently spoke to a U.S. Army war veteran,...

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5 Ways to Feel Sexy Even if You’re Sick #AWAPwednesday

Posted by on Oct 19, 2016 in ChronicBabe Basics, coping, featured, relationships, self care, sexuality | 2 comments

If you have chronic pain or illness, a decent part of your day is taken up with self-care and managing symptoms. Sometimes, you can get lost in that process, and forget that you’re also a sensual being. Today’s video includes five things I do all the time to maintain my sexy ChronicBabe side… and I’ll be curious to hear what works for you, too!     *AWAP = As Well As Possible Now it’s your turn: How do you nurture your sexy side? Tell me all about it 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: Oh, hey there. Hello. (Blows a kiss) Come sit down and let’s have a little chat, shall we, sugar?   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?   I’m sure you could tell from the intro that today, we’re talking about how to feel sexy even if you’re a sick chick. This is a challenge for me, and for many of us. If you have chronic pain or illness, a decent part of your day is taken up with self-care and managing symptoms. Sometimes, you can get lost in that process, and forget that you’re also a sensual being. For me, sexy is all about sensuality. Because I have fibromyalgia, my senses are always heightened to the max – that’s a huge part of the illness – so I often feel like I’m on overload, but mostly for BAD sensations. Embracing sensuality is about turning on your senses to all the GOOD sensations out there. It’ like pointing your little radar dish toward deliciousness. Here are a few ways I embrace sensuality in my day-to-day: When I wake up in the morning, I sometimes stretch and roll around in the bed like a cat. I try to embrace the languid nature of the wake-up time, enjoying that feeling of being in between asleep and awake. It’s lovely. I always put on some essential oils. You can buy these online from a number of retailers, and some grocery stores like Whole Foods carry them. You can go exotic, or you can go floral, or...

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How to help your friends talk about THEIR illness #AWAPwednesday

Posted by on Oct 12, 2016 in featured, friends and family, relationships | 0 comments

A lot of us are blessed with amazing friends who really want to take care of us. But sometimes, although they mean well, they cause themselves a little harm. Let me explain.  We’re sickos. We have chronic illness issues all the time, right? Our friends know that. So sometimes, they decide to NOT tell us when THEY are feeling sick. This is because they think their illness isn’t as bad as ours. Or because they know we have to talk and think about illness all the time, so why add to that? But this is WRONG, babes. We need our friends to talk about their experiences! Today’s video is a great one to share with them so they are reminded that we care. *AWAP = As Well As Possible Now it’s your turn: Have you ever had a conversation about this challenge with a friend? How’d you get them to talk to you? Tell me all about it 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: (Jenni on the phone) Oh, why didn’t you tell me? Because you thought it wasn’t as bad as what I have? Babe, tell me next time, OK? I can help! (Jenni looks into camera with face) 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? A lot of us are blessed with amazing friends who really want to take care of us. But sometimes, although they mean well, they cause themselves a little harm. Let me explain. We’re sickos. We have chronic illness issues all the time, right? Our friends know that. So sometimes, they decide to NOT tell us when THEY are feeling sick. This is because they think their illness isn’t as bad as ours. Or because they know we have to talk and think about illness all the time, so why add to that? But this is WRONG, babes. We need our friends to talk about their experiences! First and foremost, because we are PROS. We know so much more about the healthcare system than they do, so we can help them through challenges and make their experience go easier. And we can help...

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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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Info posted here should not be considered medical advice; it's not intended to replace consultation with physicians or other health care providers. 

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