Does society know how much we suffer ??

Does society  know how  much  we suffer ??

hi every one ! we are all suffering from the misery of ibs ..we konw that ..but did any one face the situation when you tell people that you have ibs and they give you that look as if they don't believe you ?? 

for example , if i miss a party or a social event coz i had a bad flare up of sudden diarrhea attack that left me bed ridden the rest of the day when i see them next time or they text asking about me real excuse is that i had a bad ibs attack ..they sound as if they don't believe me thinking i make things up to escape the event !! or they say like ( me too i had a stomach upset and diarrhea in the morning ..took 2 pills of imodiun and buscopan ..felt much better and managed to make it ..don't you take imodium ??

I think society ( may be my society mainly ) underestimate the real agony and struggle of ibs , they don't feel that it is a real disease that can be highly debilitating ( they are like you don't have cancer or chemo therapy to keep you away missing social events !!)

it is really frustrating Not to be taken seriously because  they just have little  or NO knowledge about how IBS  can be debilitating, to differentiate  between a one time diarrhea trip for normal people  that can ease simply by a pill and the  ibs type flare up or ATTACK that can end in real exhaustion and fatigue leaving us bed ridden!!

This can lead to misunderstanding from your love ones , relatives or friends.

I know  a girl  who got divorced coz her husband couldn't  put up with her flare ups 😔.

personally my GI Specialist told me No you don't have diarrhea coz your blood test results  are good!!  Now how can I convince him that I really suffer from it ??!

sorry  for  the  lengthy post , but I feel that this disease or disorder as doctors  like to call it need to be more recognised  and understood by the majority.. by running awareness campaigns on social media for example, or in television during the commercial  advertisement Break or even doing a Hollywood  movie about it as they did with (Still Alice) Oscar winner movie about Alzheimer's  disease , The Aviator movie about OCD , beautiful mind movie about Schizophrenia..and the list goes on. 

Enduring the illness symptoms is an every day battle by itself , now we have to struggle  with the social consequences and convincing ( to the point of begging ) the medical community from GPS to GI specialists that we are really  really  sick of being sick 😳😳😳

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11 Replies

  • Funny you should mention OCD as i have that too!yeah i think folk don't always get ibs.i think its pretty horrific sometimes this illness.but what helps me is logging when something upsets me and then i avoid that like the plague.i have had to cut out that much food now its unreal.i keep finding new things.i feel like I'm using the OCD to analyize food labels!what gets to me is if somebody says about my weight cos i can't help having ibs.i think people just aren't aware of it.that you aren't following diets for a daft fad or to look like latest celebrity your following them so you don't have to lie down with a hot water bottle doubled up in agony!by the way i love that quote you put up:)ps i got referred to a not sure how i was diagnosed but the dietician ordered blood tests to rule out other bowel do need a specialist of some sort.i also get back pain which can be sign of ibs also.good luck:)

  • yeah too i have OCD and also underweight ( i weigh only 40 kg) looking tired and unhealthy no matter how much makeup i wear ! i try to layer my out fits to look as if I  have more body volume , but my thin face clearly reveals my illness .My husband also getting frustrated with all the comments from my relatives side like ( Don't you feed your wife adequately ? you offer her at least 3 meals a day ?? why don't  you  take her out for a restaurant ?? )

    well ..I can't eat out in restaurants because  I have to prepare /cook my own food from scratch at home ( as I don't tolerate garlic and onions ) and they exist in every meal or sauce offered in restaurants!!

    Thank God he is an understanding  gentleman saying ( it's OK to cope with your illness it's  not like you choose it , but the thing I hate is your family and friend's rude comments  on how I ( Don't offer you enough  food accusing me of starving you  to death !! ) 

    i don't  blame him as I get annoyed eventually  we stopped  seeing them ..they seem to NOT understand what an illness means coz they are so healthy and they think ( eating enough) is the answer to all life troubles 😣 This is just pure ignorance 😥 

    i'm seeing a specialist  by the way ..I asked for a multivitamin and he refused to recommand or give any thing saying ( you don't need them ..your body might not be able to tolerate them !)

  • That interesting you got OCD too.actuslly i have a friend who has both too.but yeah that sounds awful what people say to your husband.i don't know why but some folk think its funny or acceptable to say stuff like that.pure ignorance.i find some of the things said to me disturbing.i actually put a post up about abusive friends it got that upsetting at one point.but I'm sure these kinda folk say stuff about everybody not just us.if we were fatter then they'd find fault with that too.just not very tactful some folk i think:)

  • That's interesting actually - my IBS initially caused me to significantly reduce what i was eating, and this in itself led to an eating disorder - so i don't see how people can take it lightly 😣 I've been back at a healthy weight since about May but I'm still having to cut out a lot of foods and i feel like people are still suspicious that i'm trying to lose weight (even though i'm definitely past that now - the thought of losing my periods again scares me more tbh!) and the whole thing is just ridiculous! So i completely understand where you're coming from x

  • Squiggle4 Thanks for your reply is really relieving to know that there are people who understand what i'm going through I feel so isolated when ibs started hitting my body and taking over my life slowly but bitterly 😳😩 ..may I ask how did you regain your healthy weight again ?? I find it difficult (nearly mission impossible !!) to gain Wight with chronic D and many foods being cut out because they cause the D ??

  • Which foods are you cutting out mostly? I found that the easiest way to gain weight was to sneak fats into everything - having cut down on my intake so dramatically, when i first raised it again i would get to the point of being full really quickly (because my stomach was smaller) - so eating small but calorie dense foods are great e.g. nut butters, olive oil, goats cheese. This may be difficult if you are sensitive to fats because of the ibs but the other important thing for me was to break my habit of filling up on salad and 'healthy' foods - yes they have important vitamins and minerals, but basically no energy in them and the fibre fills you up and makes it more difficult to fit in all the carbs and protein! another thing which helped me was adding protein powder to all my baking and smoothies (I don't know if you bake?) it increases the calories and helps you gain muscle as well as fat. You also get nutrient shakes such as complan which are specifically designed for weight gain (its amazing you can still find such things in a world where everything is about losing fat!) I hope this helps a bit, and don't worry about feeling isolated - it's difficult to talk openly about IBS out there but that's why this community is so great ☺️ good luck! (sorry for such a long reply) x

  • Thanks alot for your reply ..Don't be sorry for such useful and informative tips that i truly need..wish you the best 🌹

  • I feel the same way no one really understands until you are going through it, wish I could post this on facebook!

  • Go ahead post it ..public awareness is our target 👍

  • I honestly think that more people ARE becoming aware of the challenges of IBS.... and so are many drs.... not that they 'know what to do'... but I believe some of that is because it is all so complex.... My dr at least finally realized that some of my physical symptoms with IBS was directly connected with anxiety/depression and recommended that I visit with a therapist (which I am now doing) Sometimes it seems like their is NO connection because you've convinced yourself 'everything is just fine right now'... but the fear of what IBS might suddenly cause is always present, lurking in the back of your mind. KInda like a vicious circle.

  • Perhaps we need to fund a Hollywood drama with a leading man or lady with IBS.  Maybe a James Bond flick?

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