1. It's more than just bloating and it's not "just" IBS
When I was first diagnosed with the condition I was told by the doctor not to worry because it's nothing serious it's just IBS. I didn't give it much thought at the time but after year of living with the condition I can tell you there is nothing just about it. I think a lot of people google IBS and decide they have it because they bloat after a big meal or the get occasional diarrhoea once in a while for no reason. While I know that you can get various severity's of the condition mine pretty much affects me everyday. I am constantly asked when I am expecting. I am on a number of prescribed medications and it really does control my life.
2. It's not just about poo.
I know we Brits don't like to talk about poo, and a number of films and tv like to take the piss out of Irritable Bowels (I'm looking at you inbetweeners 2 ...) but that's not all IBS is about. Yes its one of the symptoms but did you know the thing that bothers me the most is the fatigue? Jenna recently wrote a fantastic blog post about fatigue and I think people don't often associate this with IBS.
3. Its not all in my head.
Yes recently my anxiety has been a big trigger for flares and I am working on that, but IBS is not all in my head. Its a viscous circle between this, my anxiety and now my query endometriosis but that doesn't mean I can think it better. Lots of things trigger flares, foods, antibiotics and other medications can all trigger reactions and telling me to calm down when I am desperately searching for a toilet or on a crowded bus is NOT HELPFUL IN THE SLIGHTEST.
4. You're clean eating advice just makes me roll my eyes.
I think people want to push their clean eating agenda on everyone. I am currently looking for some reputable sources for evidence based advice on diet with IBS and Endometriosis, but if one more person tells me to go gluten free or eat wholewheat bread I will probably scream. I tried the FODMAP diet and ended up back at the doctors deficient in pretty much every vitamin and mineral. I have to be very careful with the food i eat, but also take it on a day by day basis. Something that has triggered me in the past might be OK now. If I know that I am going to be in a situation where there is no toilet access (e.g. a long bus journey) I will stick to very plain safe for me foods. This may be more for my anxiety but its my way of coping.
5. I sometimes have to cancel plans last minute.
Which I KNOW sucks for you. My friends are fantastic and I can usually text them saying I'm going to be late because I am stuck on the loo, or that I am too fatigued to go to an event. I feel a lot more unable to do this when it comes to blogger events. I feel really silly emailing people I don't know and cancelling, but when I have a flare I sometimes can't leave the toilet and other times I only have the energy to do the bare necessities. Yes I might still be able to get through a shift at work, but that's because if I don't work I don't get paid.
What do other IBS bloggers wish people would know? I'm interested to hear your thoughts! Also please leave your blog links below, I would like to meet a lot more of the Spoonie Blogger community!