“It must be great to be so thin,” or “Oh, I think I’ve heard of Crohn’s and colitis before, it’s that nervous person disease, right?”
These are just a couple of the insensitive and absurd remarks we endure at the hands of uneducated, thoughtless people who don’t really know what we go through on a daily basis.
Today on the podcast, we’re diving into some of these crazy but true comments to remind you that you’re not alone. We all experience this level of absurdity from time to time.
And if we can just take a step back and appreciate these negative comments for what they are, comments from people who don’t understand the first thing about IBD, we might even have a good laugh together at how ridiculous they sound.
We’re talking about:
And so much more!
After this episode, you’ll be reminded that you’re not alone. Even though we live in different places and we have different IBD symptoms, we both know what it feels like to experience wacky, insensitive comments that stick with us.
When it comes to comments like these, education and laughter go a long way.
Episode at a Glance:
Mentioned in This Episode:
Episode 37: Seven of the Wackiest and Most Insensitive Comments IBDer’s are Told
It must be great to be so thin and Oh, think I’ve heard of Crohn’s and colitis before, it’s it that nervous person disease, right?
These are just a couple of the insensitive and absurd remarks we endure at the hands of uneducated, thoughtless people who don’t really know what we go through on a day to day basis. Today on the podcast, we’re diving into some of these crazy but true comments to remind you that you’re not alone. We all experience this level of absurdity from time to time. And if we can just take a step back and appreciate these negative comments for what they are, comments from people who don’t understand the first thing about IBD, we might even have a good laugh together at how ridiculous they sound.
In a world of heartache, severe challenges, and uphill battles, it’s nice to laugh IBD in the face sometimes.
Let’s get into it.[Music]
INTRO: You are listening to The Cheeky Podcast for Moms with IBD, a safe space for moms with Crohn’s and colitis, connect, explore powerful tools for healing and transform our lives to thrive in motherhood and in life. I’m your host, Karyn Haley, IBD health coach, integrative wellness enthusiast, and mom to three outstanding kids. After having Crohn’s disease for 30 years and working as a health advocate exclusively with IBD clients for the last 10 years, I know it’s time to bring the types of candid conversations I have with my clients out into the open. It’s our time to go on an IBD healing journey and do it like only a mom can. Let’s do this.[music]
[01:49] Hey there mama and welcome to the episode. On the surface, insensitive moments might make you cringe, but sometimes in those cringe worthy moments, we can find a shared experience and instead of getting mad, we can turn that anger into a good belly laugh. We all deserve light and laughter sometimes.
So, recently I went to the GLC, our free and fabulous gut love community of IBD mamas and asked them this question—what’s the most insensitive thing you’ve been told when it comes to your IBD?
The responses were brilliant, and they helped me see that even though sometimes it may feel that way, I’m not alone. You are not alone. There may not be many people in the world who understand us, what we go through on a daily basis with Crohn’s and colitis, but we understand each other, don’t we? We’re in this together. I hope as you’re listening to these insensitive outbursts, you remember that and share a good belly laugh with me.
Before we dive in, I want to remind you that if you are not already a part of our GLC, it is open to all moms with IBD. It’s a safe space with loads of IBD info, recipes, workshops and first look information. If you’re struggling with IBD and you’re looking for a safe space with no judgement, look no further than the GLC. The link to join the community is in the show notes.
CUE THE EYE ROLL.
OK, let’s find out about insensitive comment #1.
This one comes from my client and GLC member Lindsay. Lindsay is speaking for all of us IBDer’s with her frustration:
#1 “For years, I tried to find out what was wrong with me. I went from doctor to doctor, and no one knew what to make of my daily multiple trips to the bathroom. One doctor actually gave me a referral to a therapist and told me I must have too much stress in my life. When I finally found a sane doctor who diagnosed me with Ulcerative Colitis, I actually cried tears of joy. Finally, I had an answer and finally someone took me seriously.”
Don’t you love the, “if I can’t find out what’s wrong with you, it must be stress or anxiety.” With the emotional pat on the head, like runaway little girl. It’s truly appalling! What do we need to do to be taken seriously? When I ask women about their experience in getting diagnosed with IBD, it’s amazing to me how similar our stories are. It’s not unusual to wait 1,2,3 or even more years struggling with your symptoms to get a proper diagnosis and in the meantime, you’re treated like a hysterical, anxiety prone woman.
To combat the “you’re just anxious” travesty that befalls so many of us, I’ve found a few things to help with being taken seriously by those in the medical field.
THE REMEDY FOR “YOUR JUST ANXIOUS” SYNDROME.
#1- do your research before you go see your doctor and be able to describe your symptoms in a specific manner. Specific is the key word here. So, instead of a vague, statement like my belly aches, try for something more specific like I’m feeling a sharp shooting pain on the right side, just under my rib cage. It seems to flare up about 30 minutes after I eat. See the difference?
Also, research the possible treatment options for your symptoms and be ready to bounce your ideas off the doctor too. “I’ve heard fish oil can be helpful for achy joints, what do you think?” These specific ways of talking about your symptoms and potential treatment options will help give a focus to your appointment so they don’t go off on a “it must be stress” tangent.
Also, #2 know exactly what you want to get out of the doctor’s appointment before you even get there. Is there a test you someone to perform like a CT scan or a blood level like your vitamin D you want checked, or a prescription you want filled? Go in there with a plan, be flexible and open minded, but when you are certain about what you are looking to get out of the appointment, don’t leave until you get what you know you need.
#3- use some big words. Sad as it may be, when you know the proper terminology for the parts of your body affected by your illness like small intestine, colon, rectal abscess, terminal ileum, duodenum, fistula, ileocecal stricture… see what I mean? Lots of digestive system terminology, you’ll show the doctor you can be a strong contributor to the conversation and to your overall care. You don’t have to be a walking medical encyclopedia, just know the words that pertain to your IBD issues and you’ll immediately put yourself on equal footing with the doctor.
Some might call these tactics manipulative, but I call it speaking the doctor’s language. We shouldn’t have to play these games, but it helps us get taken seriously.
WHAT TO DO WHEN YOUR FRIEND IS THE INSENSITIVE COMMENT CULPRIT.
Here’s another insensitive remark directly from our Gut Love Community member, Sheralee.
Insensitive remark #2 “I always feel uncomfortable when the topic of dieting comes up. My friends are all heavier than me and they’re always trying the next fad diet. One night at book club my friends were having that conversation again. I was staying out of it because all my friends know I have Crohn’s and don’t diet. All of a sudden, my friend looks me up and down and says, you’re so lucky, you never have to diet. I was so stunned; I didn’t know what to say. What do you say to that? Uh, thanks?”
Wow, Sheralee, that’s the very definition of insensitive.
Have you ever experienced something like this? I have. This is a tough one because it doesn’t involve an acquaintance and it doesn’t involve a doctor. These types of conversations are often harder with friends. When it comes to long lasting friendships, we want them to thrive, so I think gentle and firm honesty is the only policy. After a comment like this, where you literally have to cup your hand at your chin and physically use it to shut your mouth, that I’m sure is gaping open, it’s time for a more serious conversation. I probably wouldn’t have it in front of everyone though. If you really want the conversation to mean something and not just embarrass your friend, a 1 on 1 heart to heart is in order.
It might go something like this: Hey, Jane, that comment you made about me not needing to diet really hurt my feelings and here’s why. Education is key here. I’m willing to bet your friend wasn’t being insensitive on purpose so a little education on the realities of life with IBD will go a long way. Handling it this way can not only save your friendship, but it can help spread the word about IBD. I think the more people who get what we go through, the better our chances are at finding a cure!
[10:36] #3 Along the same lines as “it must be great not to have to diet,” is one of the top comments I get all the time is… “You’re so thin.” Again, what do you say to that? I could say my first reaction which is always, I’ve had 10 feet of my small intestine removed. If you had that removed and you couldn’t digest and absorb half of your nutrients, you’d be thin too. But, after taking a deep breath and releasing it, the response I usually give to this comment (and the one you might want to give if you get some version of this) really depends on your relationship with the person who says it. If it’s someone I’m close with, I use it as an opportunity to educate them on why it can be so hard for IBDer’s to gain weight, but if I truly don’t care what they think, I just say thanks and walk away. There’s no point in that conversation with someone one who’s just thoughtless and won’t benefit from your wasted breath.
Let’s talk about incredibly insensitive comm #4. Client and GLC member, Karyn nails it with her shared comment from those well-meaning family members.
WELL-MEANING FAMILY MEMBERS ALWAYS THINK THEY KNOW WHAT’S BEST.
#4 “After I was hospitalized after a colonoscopy a family member told me….You shouldn’t have gotten a colonoscopy. You are way too young to need one.”
Cue the eye roll.
Don’t you just love well-meaning family members who think they know what’s best for you? They read one article in the paper and say, hey, have you heard about this cabbage soup thing that cures IBD? You should try that. Or with regard to Karyn’s colonoscopy, why are you doing that? You don’t meet the criteria I’ve heard about so you must be doing something wrong.
The well-meaning family member is classic. We all have one of those in our family. The thing to remember about these individuals is that they care about us and usually, their heart is in the right place. They find out this information that they deem to be life transforming for us and they want to connect with us and help in some way. This type of insensitive comment is really different from unsolicited advice from a friend or acquaintance.
In situations like this, it might just be time to grin and bear it. Thanks Aunt Helen. It’s really kind of you to think of me. And then, change the subject. What you do or don’t do to help your Crohn’s or colitis, is none of Aunt Helen’s business. Think about the good place this advice is coming from and leave it at that.
[13:40] Let me tell you about the insensitive comment I heard about most from several GLC ladies. I think April’s experience really sums it up with incredibly insensitive comment #5.
“I’m sick and tired of my doctor telling me it doesn’t matter what I eat. Even after I started the specific carbohydrate diet 4 months ago and went for my appointment, my doctor told me it was a coincidence that my bloodwork looked great and that I was symptom free. Just a combination of being on humira and having less stress she told me. When will doctors accept that food matters?”
I get it April.
This is a biggie. This food has nothing to do with your illness is utter nonsense. The most we ever hear from our doctor with regard to food is: Just eat bland food when you’re in a flare. The only way I reconcile this insensitive attitude is by knowing that your doctor most likely doesn’t know that food can be medicine, especially for IBDer’s. They aren’t trained in nutrition; they’re trained in disease management. Of course, it doesn’t make our doctors unnecessary, because boy, I want a doctor by my side when I feel awful, or I’m in a massive flare up, or when I need medicine, or a surgery. They are fantastic at those things.
But doctors aren’t food specialists. Instead, we can do two things to help with this insensitive comment.
#1 We can show up, time and time again and show them how great we are doing on our gut healing diet, and we can share information and websites with them on the power of using food to help heal IBD. And #2, you know I love scientific studies. I’m a research gal and I love when scientists research some of these different diets. Every time I find a new study, I’m bringing it to my GI, to educate him, show him that there’s scientific evidence surrounding food and IBD, and maybe, just maybe, I’ll put a small dent in the medical model they’re used to. It’s fun for me!
WHEN THEY DON’T KNOW THE DIFFERENCE BETWEEN IBD AND IBS.
Let’s turn to Jemma. She’s a GLC member who’s frustrated by our next insensitive comment. Comment #6.
“What’s with everyone I tell about my IBD saying, I know what you’re going through. I have IBS. IBD and IBS are not the same thing. Not even close. I wish people would stop saying that.”
I hear you on that one and you’re completely right, Jemma. IBD—inflammatory bowel disease—is not the same thing as IBS—irritable bowel syndrome. IBD is definitely much more severe. Especially when it comes to the serious complications those of us with IBD can have—fistulas, fissures, strictures, bowel resections, ostomy’s, j-pouches… so many complications people with IBS don’t have to contend with.
With all of these insensitive comments, we have to decide, is this the time and place for some good hearted and much needed education? In this case, I think a quick IBD road map is helpful. You might say something like, I’m sure it’s tough to have IBS. With IBD, I have some of those symptoms too. IBD can also cause more serious ailments like strictures and hospital stays, sometimes the removal of intestines… it’s hard to go through.
And if you’ve gone through a complication like this, you can tell them about your own personal experience.
So, when it comes to the IBD vs IBS comparison, bond over what you have in common, and then educate them about what the differences are. And remember, this isn’t a competition over who has the worse condition. For the individual with IBS, their challenges are real, just like our challenges are real too. Support and love goes a long way my friend.
AND THE AWARD FOR THE MOST RIDICULOUSLY INSENSITIVE COMMENT GOES TO…
OK, we made it to incredibly insensitive comment #7. And I saved the most ridiculously insensitive comment for last. This one comes from GLC mom, Genita. This one is so ridiculous. Our GLC member writes, “I work in an office space with cubicles and my co-worker comments every time I use the bathroom. She’ll say things like, didn’t you just go to the bathroom. Or what are you doing in there for so long?”
Personally, if I’m going to laugh at any of these crazy anecdotes, it’s going to be this one. Some of these are serious infractions that really hurt your feelings, and some are just so crazy stupid, all you can do is laugh. I’m definitely a talk it out, be upfront, can’t we all get along kind of gal, but with this comment, it deserves a quick quip to nip it in the bud.
Something like, why, are you keeping count? Or would you like to come in with me and find out” is in order. Comments like these are pointless and stupid and don’t really deserve your time or attention. Nip it in the bud and move on.
[20:01] So, what do you think? Have you heard incredibly insensitive comments like these too? I bet you have one in your back pocket that I didn’t even mention today. If you have Crohn’s or colitis long enough, you’re bound to fall prey to the miseducation of non IBDer’s.
Even though I know these comments can cause us emotional pain and head scratching wonder, I hope you’ll do what I do, educate or belly laugh. As a mom (and a homeschool mom too), I’m a huge fan of the teachable moment. Most of these people aren’t being nasty on purpose. The more we educate, the more people know about IBD, and the more people who demand funding to find a cure, right?
And if the moment isn’t right to educate, focus on just how ridiculous the moment is and have a good laugh about it. Laughter is ultimately the best medicine isn’t it?
Got a good insensitive comment story, come share it with me. DM me on Facebook and we’ll share an eye roll and a belly laugh together. @TheIBDHealthCoach.
Until we meet again, I’m wishing you a cheeky and healthy IBD healing journey.
Thank you so much for joining me today and for listening to today’s episode. When it comes to IBD, I know there’s a lot of resources out there, and I’m truly honored that you chose the Cheeky Podcast to get your IBD information today. If you found this information helpful, please give us a rating and review. It helps other moms find the podcast and see what we’re doing over here to help IBD moms everywhere. And if you feel called feel a call to do it, share this podcast with an IBD mom who you know could really use an uplifting message today, ’cause that’s what we’re all about over here at the Cheeky Podcast.
[20:24] One last thing, if you’re still with me, and if you are, you’re definitely my kind of gal. We have to get to know each other better. If you’re tired of living on the hamster wheel of IBD with all the ups and downs between flares and remission, if you’re struggling to get control of your abdominal pain, gas, bloating, diarrhea and other troubling IBD symptoms, go to my website. It’s karynhaley.com, and my mom had to be just a little bit different, she spelled my name with the Y. So it’s K-A-R-Y-N H-A-L-E-Y.com and schedule your very own free 30-minute IBD root cause trouble-shooting session with me where we discuss the challenges you’ve been having, we set goals to help you move forward, and we talk about how we can work together to help you get your life back. It’s a power packed 30 minutes. You don’t have to live in IBD status quo. There’s so much that can be done to transform your life so you can thrive in motherhood and thrive with IBD. I’ve seen my clients walk this path and it gives me so much joy to take that journey with them.
My entire coaching practice is run online, so you never have to leave your house and you never have to get out of your jammy or yoga pants for us to work together. You know I’m wearing them to. If you’re ready to take your first amazing step towards healing, I’m ready to chat with you. Schedule your free 30-minute IBD root cause trouble shooting sesh today at karynhaley.com. Click on the work with me tab and I’ll see you soon. It’s important to note that the information in this podcast and in this episode is for general information purposes only and not intended to be a substitute for professional medical advice. The statements made in the Cheeky Podcast for moms with IBD, either by me or my guests, is not intended to diagnose, treat, to cure, or prevent any disease. Before implementing any new treatment protocols, do yourself a favor and consult your physician first.
Thank you so much for listening, for being here, for saving this space for us to spend some time together. Until we chat again, I’m wishing you a cheeky and healthy IBD journey.
These statements have not been evaluated by the Food and Drug Administration.
This podcast, video, and blog post is not intended to diagnose, treat, cure, or prevent any disease.