Family difficulties

[Book_Worm5]

Does anyone have problems with their family just not understanding IBS at all?

I’ve recently fallen out with my mum because she won’t stop suggesting whatever I’ve eaten that day is causing the problem - I’ve told her this isn’t helpful and is demonising food types (I follow fodmap and avoid the usual triggers). One week I’ve apparently not eaten enough eggs and the next I’ll have eaten too many and that’s causing my issues. The same goes for tomatoes, I’m drinking too much water or now not eating enough gluten in her eyes 🤪

She did not react well to being told this type of thinking isn’t helpful as I’ve never been able to identify food triggers. Her and my dad now won’t discuss or acknowledge my health at all which is damaging in another way as sometimes you just need a person to listen and not give unsolicited advice.

She also won’t stop suggesting going out for meals which I’ve told her I’m not comfortable with as I can’t eat a lot and get sore quickly.

Curious to know if anyone has the same issues.

[Luisa22]

Not family members with me, but friends. I only have one functioning family member now (and another one now with bad dementia, who knows nothing about my issues) The one family member may not understand 100% -who can who's never had IBS?-

But they do try to be considerate and I'm grateful for that.

But friends, yes. They are always coming up with something new that I "should try". Often I already tried it and it doesn't work for me.

Or I should take high dose supplements of one kind or another. I don't want to OD on anything, as I already take vitamins and minerals 100% RDA. I can already eat a number of foods that contain those vitamins and minerals also.

Or some other thing I should do or take, or watch, or read.

When I have already done weeks to months of research (I had to as when this started we were in lockdown and there was no one else to help me.)

And those people talk to me as if I'd just been born and knew nothing, or how to manage my IBS,

Because they said if I'd got it right, I wouldn't still be having symptoms

Whew....they know nothing about IBS then.

Oh and the other thing people say is "You should go to the doctor if your IBS hasn't gone away by NOW!"

I have learned to let it roll over me and try hard to avoid discussing it any more. I do know those friends mean well from the bottom of their hearts, and that's my only takeaway. I'll take that and leave the rest.

But I do feel misunderstood and not heard at all, by those people.

[Zantecat in reply to Luisa22]

Ha ha, Mums are great aren’t they? Mine ( as I am sure many others do) is great at telling me how Ill I look,, we take notice of what our Mum says because we know they love us, but they aren’t always the best Doctors.

I know what it’s like to not know your triggers, I can have times when Everything triggers IBS, then others when I can eat anything, I think only a person who has this horrible disease can understand it, Mums probably never will, you have to advocate for yourself, and live within your own capabilities in terms of what you can and can’t do, it is unfortunately a misunderstood and unrecognised disability , it is a challenge to live a satisfying life with it , never expect others that don’t have it to understand, or even bother to try explaining, just take every measure you can to be self supportive, be kind to yourself and do whatever it takes to feel better.

[Luisa22 in reply to Zantecat]

I remember my Mum, bless her. Now oddly, she always had the right instinct about me. She seemed to know how I ticked.

Remembering what she did (making me strong peppermint oil in hot water, or giving me a hot water bottle etc without saying much), or whispering to me..."have you 'been' today?" -and it's when I recall those things, that I realise I probably had some tendency to IBS all of my life.

She always knew when I had a tummy ache,

Wow, I had kind of forgotten all that and I didn't realise my gut was a bit sensitive even then. She had never heard of IBS of course, but just knew what to do. Bless her Soul.

[ANB80]

Hi Book Worm5. For me, it has taken a long while for people around me to understand but there are still a few who still cannot so are not helpful or mindful of my IBS. The main people these are my dad and my brothers. So, I just carry on and ignore them when they have anything to say about my IBS as they are far from helpful. They're the type of people that just think it is all in your mind 😔

[xjrs]

The saying that "you don't choose your family" is a good one. My Mum used to tell everyone I was vegan (when I am not). Family meals out is the favourite pass time. I now tell everyone that I don't eat out (end of). She kept thinking that IBS is something that I will recover from and I will be able to eat out again - she kept asking the question "are you better now?". Unfortunately, this comes from a selfish place since, what this really meant was when will I be well enough so I can accompany her out for a meal since it is her favourite activity. People can have various motives for what they say.

On the other foot, loved ones may respond better if they can see someone helping themselves (this is often where unsolicited advice comes from). When you say you've never been able to identify the triggers, have you done full FODMAP elimination and reintroduction with guidance from a dietitian from GP referral? This includes keeping a food diary and only making one change to your diet at a time?

Following FODMAP and avoiding usual triggers may not help since there are no 'usual' triggers as far as IBS is concerned. It is very personal. Did you eliminate all FODMAPS prior to starting reintroduction? Did eliminating all FODMAPS help your symptoms? If initially eliminating all FODMAPS was no help at all then there may be something else going on to discuss with your GP.

If you have been very low FODMAP for a long time, this can be counterproductive since it reduces feed for the microbiome, causing imbalances and worsening IBS. This is what happened to me. I got symptoms no matter what I ate. I had to find other methods to improve my tolerance to foods, to have a broader diet and start feeding my microbiome again. For me this was Alflorex probiotic and Linaclotide (for IBS-C) only. I still have food intolerances, which affects my ability to eat out, but I am now able to eat a much wider range of foods. Previously, my diet was extremely limited.

[edwangy]

my Mother is exactly the same, she keeps asking me if I take anything for it, and she keeps saying that surely there must be something 'they' can do. She's just annoyed that I don't pay her enough attention.I don't bother ringing her anymore

[hamsterlobster]

I think your situation will resonate with everyone here. It's one thing to not understand as a lack of knowledge can be very ignorant but people can educate themselves to be more supportive.

What you read online about IBS isn't a true representation of how we live with IBS. I've read numerous articles about eating the correct foods and living a healthy lifestyle and taking probiotics is the way forward but as we all know, healthy foods can be the problem.

The problem is, any family or friends who have done some research to try to be supportive will be reading this and thinking AH! so she just has eat the right foods...what is she moaning about?

In reality, IBS is a term that's used to describe a set of symptoms where the cause hasn't been found yet. Some health authorities are good and testing etc. but others are doing the bare minimum. In 18 years of suffering, up until recently I'd only had blood tests and a colonoscopy when I know there are far more tests to be done to try to diagnose my problem. I've currently been waiting 5 months for an urgent appointment with a gastro and still no date through yet and the reason for the urgency is my bleeding and inflammation that is making every day unbearable. This is after telling my GP that I can't live with this condition much longer because its affecting my family and no one wants to hold their kids back from doing normal things outside of the house.

Whilst living like this, we are being made a laughing stock in comedy routines, tv shows and films and this is why no one, including your family, takes it seriously. Everyone thinks its funny to have a bit of 'gas'. I wonder, if these people knew how much it ruins peoples lives, would they use it for cheap laughs?

To rub salt in the wound, I've recently been invited to a patients public meeting at my local surgery and to draw me in they said 'come and eat cake'! I haven't eaten cake since 2006!

The publics perception of IBS needs to change. We need to be taken far more seriously.

[ruskin10]

Oh yes, until my grown up son started having similar symptoms he really had no idea how life changing IBS is.

[Frances23]

Afraid so!

[BabsyWabsy]

In a sense, I was lucky on this front because my younger brother was diagnosed with BAM & Crohn's before my problems started. I have colitis & am allergic to wheat, so bro primed the pump so to speak. It never stopped my Mum from making me a sandwich or offering cake of biscuits though, which was a bit awkward.

[Edgar77]

I feel for you. I have lost all my fair weather friends over the years. My family just switch off if I mention my IBS. They say they understand but clearly don't. My mother was a good listener but sadly we lost her last year. My mother in law understands as she has similar problems, and my sister understands to a point. As for my husband he is hopeless. Always blaming what I eat when I can eat something one day and be OK. Eat the same thing a week later and be upset for days? I came to the conclusion that stress is a big factor. He stresses me saying. EG Your attention seeking" or "your not trying " "stop moaning" ect ect so no it is not helpful. Perhaps you could point out to your pairants that you eat the same thing before and was OK. And that stress plays a big part in IBS too. Have you been tested for celiac disease.i only ask because it is often overlooked by doctors.

[JBaird1952]

hi there , I too have problems with family not understanding IBS my daughter thinks I’m putting it on and hasn’t spoken to me for months now, after I couldn’t get to her daughters graduation . There was a lot of extreme animosity coming from her and her daughter so I had to stop contact. The stress caused by this was enormous and made things worse. I don’t know why folk don’t understand why you can’t constantly dine out with them or do whatever they want to and not consider how you are feeling.

I hope you can get some comfort on here with us all and know you are not alone.

[Ceasersalad]

Yes , sometimes my husband understands, and majority of the time he has no clue and keeps diagnosing oh its just gas , oh don't eat this or that . And eating out on occasion, he seems to think what types of food is best for me. When I already know my body and my triggers, which can change at different times . I can eat pizza and get away with it but the next time I can't. Its a lonely disease, as nobody really understands what we go through every flipping day . Its just a living nightmare with the most normal thing like eating and using the toilet