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Family doesn't understand IBS

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#1 Reed

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Posted 03 August 2013 - 10:22 PM

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In the past, I've been afraid to tell people about the IBS.  It's embarrassing to me.  So I either pushed through or made up an excuse to get out of things I couldn't do.

 

Now I'm at the point where I'm just telling people.  And most people are fantastic about it.  They appreciate the honesty.  And they almost always know someone who is dealing with something similar. 

 

However, I have some family members who feel that I'm over-stating things.  They feel that because it's called "Irritable" it can't be that big of a deal.  And they have a hard time believing it takes weeks to recover from a flare.  I had a bear of an anxiety attack during my last flare and was told I'm just over-reacting.

 

I have tried to explain the pain to them (as well as the anxiety) but they tell me I need to just push through it and "man up" and learn to deal with it on my own.

 

Not even sure how to respond to this. 

 

Has anyone else run into this?  How did you handle it?  


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#2 IndianRopeTrick

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Posted 04 August 2013 - 03:37 AM

Same here. My parents and a FEW of my relatives know that I am suffering. But, they don't think its IBS or its too serious. They tell me not to think too much about IBS or do research on the net. I understand that it helps to focus away from the disorder, but I cannot help but vent my feelings or look around for some hope after flare ups. Its not their problem (I hope it never will be), so they cannot understand the seriousness or the life-altering effect of it all.

 

I tried explaining to some members, but they just shrug it off by saying that its just "poo" and everyone has "poo problems" and that its all in my mind. Some even go so far as calling me a cry baby or saying that I am using it as an excuse for my shortcomings in life (yeah right ! I dont achieve maximum in life on purpose) . Some of the members who have a strong background in science even dismiss IBS as a "doctors invention". But my suffering is real, right ?

 

I can't blame them for the way they think. Perhaps we all would have reacted the same way if we had not seen IBS. But, I wish that the least they would do is to not make me look like an escapist or a nut. During my good days, I don't even think about any of these things. I have decided to be as tough as I can and struggle against it. When almost no one is with you, then walk alone, at least until someone can join you.

 

I hope that you get better soon.

take care.


IBS Free after about 8 years ! Now, I am living with a small Hiatal hernia and fixing my sleep problems. Not too bad.


#3 annie7

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Posted 04 August 2013 - 06:17 AM

omg--"doctors' invention" --oh yes, i've heard that one too.   unbelievable.  and yes our suffering is real.  and yes it would be easy to think that way if someone doesn't actually have it and have to suffer with it on a daily basis.  but still....one thing about having an "invisible disease" like this is it has taught me to be much more sympathetic about other people who suffer from other invisible diseases.  and there are a lot of them.  

 

when people tell me "but you don't LOOK sick" (don't you just love that remark)  i say: " thanks. i work hard at that"  hopefully it makes them think...

 

back when i had my ibs diagnosis (now, after some tests, it's colonic inertia and pfd) , my family didn't understand either.  or the doctors. i got the same thing about "it's all in your head,"  :"you're over reacting" , it's your fault--you don't eat right" ," just eat fiber, exercise drink water and you'll be fine"  yadda yadda yadda..

 

i know that on this board there is a link to a printable brochure that explains ibs to people--what it's like, that it's real etc. and you can print it out and give to them but of course getting them to actually read it can sometimes be a problem.

 

and i've always felt that the word "syndrome" in the name causes people to be more dismissive about it.  like it's an "all in your head" thing and not a real disease.  wish they would change the name.  at one point i just started telling people i had a functional digestive disease.  

 

yes, good luck to both of you and all of us suffering from a functional digestive disease.  hope we will all feel better soon and have better days ahead.


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#4 Reed

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Posted 04 August 2013 - 01:34 PM

Thank you so much.  Your experiences echo many of mine.  When a disability can be seen, people understand.  If it can't be seen, suddenly it's "not real" and you're just making it up, it's all in your head or you're just "pretending" for attention.  Even if those qualities are the furthest from your true character. 

 

What I've found is that most people with IBS find it difficult to be in the stream of life. The last thing they WANT is attention. Understanding, yes, but attention - no.  Afraid of getting sick in public, we tend to isolate and keep to ourselves (which is why boards like this are a blessing). And when we do get sick in public, we downplay it.

 

Yes, I'm told not to go online to look up more about the disease - which is just nuts to me because the doctors don't have a lot of answers but those who have been through this are a wealth of knowledge.

 

And I've been through the "you're using it as an excuse."  An excuse NOT to do all those things I'd love to do?  Well that makes sense!  Yes, my life of choice is TV and books.  If that WERE my life of choice, why not just do it without the pain part?

 

And it is hard when it's combined with the anxiety because then people treat you like it's REALLY imaginary. Most of my friends and family are great.  I do what I can when I can and if I need to cancel they ask "is there anything you need?" but then there are some that roll their eyes and act like I'm making it all up.  And when they do that it just adds insult to injury.

 

Thanks for listening.


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#5 annie7

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Posted 04 August 2013 - 02:43 PM

and thank you, Reed, for posting.

 

you are so right--boards like this are a blessing.

 

i've had constipation problems since childhood and in the early 70's was diagnosed with ibs-c or "spastic colon" as they  called it back then.  i felt so alone--didn't know anyone who had problems like this. and after having it downplayed like i described earlier by both doctors and family for years and years i began to believe they were right--that it was all in my head and i was a wimp, overreacting etc etc.

 

when i finally found this board in 2000 and began reading, i actually cried.  i finally realized i wasn't alone.  and it wasn't all in my head.  the support and information here have been such a tremendous help over the years.  thanks Jeff!!!


these are just my own thoughts. for expert medical advice please contact a health care professional.


#6 IvyWinter

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Posted 04 August 2013 - 09:08 PM

You know, i have family and friends who, for the most part, do really believe me and understand that i suffer. My dad is great about it. I cried because it was father's day this year and i had a flare up and couldn't make it to  brunch and he said "any day can be father's day, stay home and feel better". And it was wonderful yet... I still feel very alone. Although people are supportive, they still don't know the anguish you are going through. Why it makes you cry, why you want so hard to push yourself to do things anyway, how you don't feel like you're living a normal life.

 

If it weren't for this forum, i'd feel even more alone than ever. It's so, so difficult, more than most people realize. 


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#7 chlorophyll

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Posted 04 August 2013 - 10:34 PM

You tell people it is like having food poisoning without the vomitting aspect, and that any food you consume is a potential candidate for triggering symptoms.

 

The few times I've eaten something bad the want / need to vomit was really the only thing different to how I usually felt during an IBS attack.



#8 SillySalmon

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Posted 07 August 2013 - 04:47 PM

I totally understand. My family doesn't get it at all. My dad is constantly offering me foods that I can't eat. I tell him over and over - no spicy, no red meat, no grease, no garlic, no onions. But then that's exactly what he gets. Or, if I mention that I've been constipated, he'll bring a smoothie with more fiber than any human being can digest and tell me it's a "good" thing if I get the runs after I eat it, because it's "cleaning me out." 

 

And my mom is intolerable. Every time I tell her I can't have something, her response is, "Yes you can, you have to quit projecting or you'll MAKE yourself sick!The only reason you get sick when you eat these foods is because you tell yourself you're going to. If you would just eat it and stop worrying then you wouldn't have any reaction to it at all. You are way too young to have IBS." Grrr, it's beyond frustrating.



#9 Going Going Gone

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Posted 07 August 2013 - 06:37 PM

Yikes! I've been annoyed with my mother lately because of her treatment of my issues. She keeps insisting I try her 'cure of the week'. This week it was bone-broth. Before that, it was eliminating gluten. (Which I'm told can actually be helpful for some people, but in my case, considering breads, etc, are some of the few things I can really safely eat without getting sick and my gastro said not to eliminate gluten [in front of my mother], isn't something I'm considering.) Etc, etc. In addition, she goes through 'causes of the week.' When the virus that caused severe food poisoning like symptoms in the southeast, I had a bunch of family members tell me that was what I really have. She's also told me I have leaky gut syndrome and whatever else she happens to see on Dr Oz or her Paleo pinterest pages that week. I just feel like people aren't listening to me when I tell them it's IBS - it's always something else in their minds (never mind their lack of a medical degree). 

 

That said, that's pretty much the only issue I've had with her. If I tell her I can't eat something, she won't force me (unless it's one of her claimed cures). She just lets me cook something else for myself. And she doesn't think that it's all in my head, either. Reading you guys' situations has made me feel a lot more grateful for my own mother. I hope your situations improve soon! :)



#10 Reed

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Posted 07 August 2013 - 11:54 PM

Oh my gosh SillySalmon!  I hear that ALL the time from certain friends and family - you just THINK you'll get sick so you do.  Really?  I think it's because stress and anxiety actually DOES make IBS worse but you know what? It also makes labor pains worse and migraines worse and pretty much any pain from any disease worse.  It's not like labor isn't real! 

 

Sorry.  Soap box.

 

Thank you for hearing me and sharing and for paddling the same canoe.  It truly helps.



#11 SillySalmon

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Posted 08 August 2013 - 02:33 PM

@ Going: Oh, I hate that. My dad does that too. I don't understand what's so hard to get about IBS. It's pretty self-explanatory - your bowels are irritable. That doesn't mean that other things couldn't be causing it, but usually IBS is the conclusion doctors come to AFTER they've ruled out most other possibilities. 

 

@ Reed: Exactly! It's so weird. It's like people can't believe anything they've never heard of or can't see. Though even after a demonstration they don't seem to believe it. I mean, is rushing to the bathroom after you eat not evidence enough? 



#12 IndianRopeTrick

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Posted 09 August 2013 - 10:15 AM

I totally understand. My family doesn't get it at all. My dad is constantly offering me foods that I can't eat. I tell him over and over - no spicy, no red meat, no grease, no garlic, no onions. But then that's exactly what he gets. Or, if I mention that I've been constipated, he'll bring a smoothie with more fiber than any human being can digest and tell me it's a "good" thing if I get the runs after I eat it, because it's "cleaning me out." 

 

And my mom is intolerable. Every time I tell her I can't have something, her response is, "Yes you can, you have to quit projecting or you'll MAKE yourself sick!The only reason you get sick when you eat these foods is because you tell yourself you're going to. If you would just eat it and stop worrying then you wouldn't have any reaction to it at all. You are way too young to have IBS." Grrr, it's beyond frustrating.

 

How do you survive ? I feel this is precisely one of the reasons we NEED some kind of flyer or brochure which gives people a good overview of IBS. Its quite likely that if your mum and dad got the right info, they would be able to understand your situation better and accommodate your special dietary needs.

 

Hope things get better for you.


IBS Free after about 8 years ! Now, I am living with a small Hiatal hernia and fixing my sleep problems. Not too bad.






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