How to deal with people commenting about Crohns

[Mark Dunne]

Hi all, I'm just wondering how all of ye deal with family and friends commenting on your Crohn's. My Crohn's isn't on the bad end of the scale but still suffer with all of the symptoms; fatigue, pains etc. What do you say to people who think you're only making a lot of it up? Thanks in advance.

 

[If*]

Hi, well it depends. Do you care what they 'think', in attempting to increase their knowledge, or validation..possible all?
It is pretty much indescribable at times, unpredictable and symptoms can be so different day to day. I would think it would be exhausting and I feel it would be a waste of time to have to try and convince someone you feel unwell. The energy is better spent in caring for your own well being. Sorry if this sounds insensitive. Those who know you best will understand.

If you want to increase their knowledge, point them to some literature on Crohn's. There is a vast amount out there.

Comments from friends, and family can happen. Many hear silly things, like well you should, shouldn't, my friend said, a sister of a cousin of a friend is fine and has it...blah, blah...It can be endless. The best thing i have found is to educate yourself to the best of your ability, and if they really care they will to.

Be well, God Bless.

 

[Tony H]

Its a hard question to answer and as "If " said do you care what they think , if its close friends and family try to answer their questions and educate them as to the different kinds of idb , and the differing symptoms ,
In my position in life I realise that only my close family and friends opinion matter to me , I dont really care about peoples opinion any more , try and get healthy and realise that real friends are rare and if you are lucky you get to have a few in this life,
really hope you fell better soon , sending you hope and prayer ,

Tony

 

[Cat-a-Tonic]

Invisible illnesses can sometimes be tough for the healthy to wrap their minds around. You don't "look sick" so they can't imagine that you actually are. If you don't mind being rude, you could invite them to stick their heads up your backside and see for themselves! Just because the outside looks okay doesn't mean it's the same story on the inside. If you'd rather not be rude, like lf* said, your best bet is to show them some literature. The spoon theory is a good one for explaining about how you always have to make decisions with your illness and energy levels in mind. The link to that is here:
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

[Lizzie]

I think people get confused between IBD and IBS, that's the problem, and that's why they don't always realise it's serious. I just say I have a nasty disease and that I have to be very careful what I eat. I find the biggest difficulty is that although people mean well, they can put huge pressure on you to eat stuff you know you mustn't eat, and they don't want to take no for an answer as they don't understand the disease. I deal with it by telling them that I might well end up in hospital getting a colostomy bag if I just ate what I fancied, as my gut is so unhealthy I might as well be eating barbed wire. This always seems to get the message over! People who know me well know that Crohns isn't a minor problem, and what does it matter about what strangers think, really?

 

[Mark Dunne]

Thanks for your kind replies, it doesn't really bother me a lot but when it's constant nagging about oh you're not sick you only want a day off when it bugs me. Thanks though for your support.

 

[shamrock15]

Give them a link to this site and have them browse awhile. What's the saying "That many people can't be wrong?"

 

[Melanie1]

Most of my family know what its realy like ,I have relations with the either crohns or colitis.
As for other people , wel it realy depends on how im feeling, some days I just smile and think if only it was as you say,and other days, I say tell me what you think you know about IBD ....

 

[Pug Gamer]

I have had frustrations with friends and family sending me links or telling me about amazing cures due to eating salmon, kale, a wonder drug that contains ingredients nobody is allowed to know etc etc. I just ignore it or change the subject. If they continue i just say ive tried that, or i cant have that. Some people i have tried to educate, like family. But they continue to ask the same things or act surprised about something ive told them 2x before. So i think its best to just ignore some people on the subject and focus on yourself.

 

[Lizzie]

Yes, that drives me mad too, when people tell me about "cures" that I've already heard of anyhow, that I know are useless or only help people with the mildest symptoms. I resist getting into arguments any more because I know it's pointless (you just get further criticism for your negative attitude, as if mind over matter could cure you if you only tried hard enough). I just make some mild comment about how I'm sure I'll hear soon enough about any brilliant cures on my Crohns forum because fellow sufferers will certainly want to share the joyful news!

 

[EmmaLou]

I've pointed people in the direction of literature and informed them that IBD can land people in hospital having major surgery if left untreated. I've not had anyone question me, or say 'isn't that the one that gives you tummy ache?' since the problems that led me to life in Bagland. I agree about being constantly told to cut things out being very annoying. If one more person tells me to cut out gluten or dairy, despite not being intolerant of either, I'm going to snap. Will see how they like it when I tell them to cut out oxygen and see how they do!!!

 

[warrior2]

it's a never ending task to explain illness you have. Don't waste your time explaining.
ask them to google it. no one ever gets it. forums like this is where your time is well-spent.

 

[ronroush7]

Amen. People here are really supportive.