Sunday, August 18, 2013

Embarrassed by IBS

I used to be embarrassed by my IBS. If I was going through a rough patch where it was completely necessary to always have instant access to a bathroom, I would just stay at home. I couldn't fathom my friends knowing I was having stomach issues. If my stomach would make ridiculous noises, I would turn red and apologize profusely to anyone within range. I'd grin and eat whatever I was offered because I didn't want to have to answer questions about why I was refusing or make the host feel bad. In short, I was embarrassed by my IBS. If you have followed my blog for any length of time, you'll know that time is long gone. I share all :)

I grew up. I realized I don't choose to have this Syndrome. I mean, who in the hell would choose to give up their favorite foods or feel super sick when they cave and eat things they shouldn't?? Just as someone with any other sickness (cancer, diabetes) did not choose what they have, neither did we. Anyway, I came to accept that this had become a part of who I am, and, just like any of my other quirks, if people didn't like this part of me, too freakin bad. My IBS defines most of how I live my life; I cannot just hide it away to make it less uncomfortable for you.

That was until I started at this new store. I suddenly realized that very few people there knew what IBS was, and even fewer knew that I had it. Some of my techs found out about it when I was talking to them about whether or not I counsel patients about constipation when they pick up pain meds. My comment was, "Well, if they're on it long-term, I talk to them about it, but if they're on it for a few days, I don't. Not many people like talking about poop." Someone responded saying that no one likes to talk about poop. My response, of course, was, "Well I blog about it." Obviously, this left everyone there basically clearing out their ears wondering if they could have really just heard what came out of my mouth. Once I assured them that is what I actually said, they had to look up my site, and they didn't like what they saw. My IBS had make someone feel uncomfortable, and I just knew they were all judging me for it. It probably didn't help that one of the first posts they saw was a detailed description of how my mornings usually go, but still.

I know it's silly to be embarrassed by my IBS, but I got into a sweet spot where everyone in my life knew explicit details about my IBS and had come to terms with it. They accepted that me blogging about it was how I dealt with how singled out and lonely it makes me feel, and how I connected with other people like me. To them, it was part of knowing and loving Rachel. Now that I'm in a new place and have all of these new people with whom I interact, I don't know how to go back to not being embarrassed. I thought about just hiding the fact that I have IBS and trying to wiggle my way out of awkward situations (refusing food, etc), but I don't want to go back to living like that.

Yes, I talk about some graphic things on this blog, but the gruesome fact is that poop has ruined so many of our lives. Well, maybe not "ruined" for some of you, but most of us live our lives based on when we poop, what makes us poop, and figuring out how to change that and get back to normal. Talking about this on a public forum helps ME. And based on the amazing comments and emails I get from all of you, it helps you too. And that's why I put my embarrassment aside and talk about it as I would talk about it with my doctor, or fiance, or sister. Because just like poop, getting it all out just makes you feel better :) And joking around about it helps too.

Having a blog doesn't change the fact that I have IBS. It doesn't stop the urgency, doesn't quiet my stomach, and it sure as hell has not made it ok to eat pizza again, BUT I remember how lonely it was when this all started happening to me. I remember thinking that anything I put in my mouth might as well be poison because that's how it made me feel. I remembering avoiding anything but bread, rice or cereal and losing tons of weight because I didn't know what else to do and my doctor didn't know either. And then I found the about.com IBS page, and I learned something about IBS. I started making a list of what my trigger foods were and what foods I could safely eat, I read comments from people who sounded just like me and struggled through the same things I struggled through, and I thought, "What if I just blogged about what's happening to me? What if I wrote everything I know about IBS in one spot so someone newly diagnosed with IBS has somewhere to start, someone who's on their side, and someone who knows what it feels like to have a broken body?" So I started blogging. And someone emailed me and thanked me, and it was all worth it. If this blog helps a single person on their path to health or makes then feel like someone understands them when no one else does, then it has done its job. And because I know it has, I can get over this small embarrassment of coworkers judging how I deal with my personal struggles. Because I know you people are out there, and that you get me. And that's what matters.

14 comments:

  1. Excellent post Rachel! I also have IBS and blog about it and have made a similar transition to you. I fairly openly talk about it; however, the blogging was not necessarily well-received by all of those in my circle of friends and family. Glad to see there is someone else trying to help others who suffer from this through blogging. Can't wait to check out your other posts!

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  2. Hi Rachael,
    I have recently been diagnosed with IBS and am on my third week of cutting out gluten and keeping a food diary to try and locate my trigger foods.
    Its tough but finding blogs like yours definitely makes you feel like your not alone and it is possible to live and manage your IBS.
    Yeah you might be blending smoothies and soups at 10pm for lunch the next day but I've found that a little planning of your diet is paid back with no bloating and cramps or having to cancel plans because you are literally scared to be too far from a toilet : )
    Keep up the good work and educating (especially the new peeps in your work : )

    Have a fabulous day!

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  3. Quick question;
    I am going on holiday for a week. any tips for eating out / in the hotel?
    Thanks Sx

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  4. I always check to make sure that my hotel room has two things: a mini fridge with a freezer space and a microwave. Then I bring some of "my meals" so I have something to eat while I'm staying there if I can't find food that seems safe to me. "My meals" consist of certain Lean Cuisine meals that don't upset my stomach but still fill me up with protein and other nutrients. Then I of course bring cereal, plenty of protein bars and MY MEDS! While I haven't had to use my meds on recent trips, they make me calm enough during the trip just knowing they're there so I don't work myself into an episode.

    I also usually map out restaurants where I'm staying and look at menus to pre-plan meals for myself. Try to stick to either what you've brought or what you've decided on beforehand so you don't have any surprise episodes. And don't forget the heating pad!

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  5. Hey Rachel!
    I must say I'm so glad I've found your blog (can't believe I didn't realise before that I could search for IBS related blogs)! I'm a 23-year-old girl from Finland and suffering from IBS. I've started to read your blog posts all the way from beginning and I'm so relieved to see that there are other people out there who have exactly the same symptoms,problems and thoughts as I do! I can relate to so many of your postings. I just read your post from August 2010 and I agree, it is a disease because it affects our lives so much.
    I'm still in the stage where I haven't have enough courage to tell about my IBS to people, only my boyfriend knows properly and my mum knows a little bit but maybe not fully what it really is about.
    I don't know when I'll be able to explain to people about this problem but if it gets worse and if I have a job in the future, I might have to. It'll be very hard though!

    I'll definitely keep reading your blog and I must say you're really brave as your IBS symptoms seem to be far worse than mine are at the moment.
    Take care!

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  6. Just discovered your blog and can totally relate, I too have IBS with non-celiac gluten sensitivity. Its been 10 years since my severe symptoms started and from that point up until 2 years ago when I was finally diagnosed with IBS, I've alienated whatever friends I've had because I cannot keep plans when I do make them and too anxious to even try and go out. Its isolating, but I feel at this point I don't have a choice. So thank you for sharing your IBS world with your readers, its comforting to know that it isn't all in my head.

    PS-Your blog font is really hard to read... maybe consider changing it?

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  7. Aw crud, I found one that looked like my handwriting so I kept it. I'll change it back cuz I want people to actually be able to read it. Thanks for letting me know!

    And thank god for texting and the internet. I can still keep in touch with friends without having to leave my house. I can say with certainty that I wouldn't have any friends if it weren't for the digital age.

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  8. Glad you're handling your IBS with dignity. IBS can ruin your life if you let it. You know what I've been through and I beat my stomach issues.Doctors aren't always right about what's best for you. You know your body and know when you need to react. After time you learn when to start and stop certain meds. Glad everything is going good for you and hope your good luck continues for a long time.

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  9. Hi Rachel,

    I have just discovered your blog after being diagnosed with IBS just over 2 months ago- and I am SO relieved to know that I'm not alone. I was told by my doctor that nausea isn't a symptom of IBS, and that I was just making it up, but after reading your blog and speaking to other sufferers, I know my doctor is wrong! Similarly to you I have a phobia of vomiting, yet find I have to sleep with a bucket by my bed just to stave off the horrible sick feeling I get each night. I'm still working out what my triggers are- though I know alcohol is a definite no-no so I have become totally sober (even though I have never been a big drinker), which is pretty rare for a 24 yr old British girl!
    Thank you for reassuring me that this condition can be managed through the good and the bad! I'm so glad that you have the confidence to blog about even the most graphic of your experiences, it's something all IBS sufferes should be more open about.
    Keep up the inspiration!!

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  10. Rachel...you are my IBS best friend, whether you want to be or not! I'm 34 and have had IBS since I was 17. And like yourself, it wasn't so touchy at first, however I was a vegetarian until I was 24, so that may have affected it some. (12 years total) I am jealous to see that your diet allows you to eat cheeses, yogurt and bacon (which I do...One has too.) without them being trigger foods. I am very open about having it as soon as I meet someone. Male or female. My family is just now realizing that sitting at home isn't because I do not want to see them, it's just that I can't leave my comfort zone. I have the diarrhea IBS. I've never dealt with constipation. And when ppl ask if I'm pregnant because of the bloating or why I am skinny... I'm not shy to share the disease...in depth. I use the bathroom 10-12 times a day and really should invest in toilet paper stocks! Make some money off this : )
    I hope to see more blog updates!
    *Having fun with IBS: Although it was painful as hell...a friend and I timed a milkshake. 7 minutes and that's all she wrote. hahaha. And I struggled to get half way through it.
    I know that IBS controls me. It took me years to allow myself to realize this...but she's not going to rain on my parade! (well for at least another hour or so.)

    Victoria

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  11. Hi Rachel,
    Please see www.irritablebowelrelief.net

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  13. Hi Rachel

    Wow, I'm glad I stopped by and saw your post "Embarrassed by IBS". You express yourself so well about IBS, but is it really an embarrassment?

    1 in 4 of us experience IBS at some point in our lives, so with that in mind, should we really be treating it as an embarrassment? Of course, the simple answer is to say YES...um,,,we don't talk about our waste disposal systems do we?

    But, should we be changing public attitude to this or is it IBS sufferers that should be changing their perceptions to people opinion? After all, doesn't it just create more stress "keeping it quiet" and in turn possibly making your symptoms worse!

    I have long championed the cause for people “coming out” with their bowel problems and also seeking early help for their symptoms. Seeing you blog about all this really is GREAT as it puts it out in to the public domain.

    What constitutes “embarrassment”? I looked up the definition of this “a feeling of self-consciousness, shame, or awkwardness”.

    So, its self-consciousness - I think we all experience this, shame –no I don’t think anyone should feel shame about having a bowel disorder, as you say no one asks for one! Awkwardness - no, I don’t think anyone should feel awkward about IBS when so many people have symptoms. So, does it come down to self-consciousness? I’ll leave you to decide…

    All the best

    Peter

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  14. Hey, Long time no see. Talking about "Poop" isn't always a bad thing. My family, including my kids, know about what my disease was , and how I made the change for the better. Expressing yourself about IBS or IBD isn't ever a bad thing. People that judge you are ignorant to the facts about it. Education is the key to understanding. After my surgery, I fell into a dark place until I learned that not many people know exactly what an Ileostomy is. Once they knew what it was and more importantly, why I had one, everything was fine.

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