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What to do when people say 'I have Crohn's too!'

Last updated: September 2022

When you feel alone with your illness, there's often nothing better than speaking to someone who gets it. But Crohn's still is a relatively rare disease; meaning the chances of you knowing many, or indeed any people with it is rare. So when someone does say 'oh I have that too!' we instantly feel a bond. But people being aware of the disease or having a connection to it isn't always a good thing. Let's discuss the different answers you might receive when you say you've got Crohn's disease.

What to do when people say 'I thought I had that but..'

One variation of this is when people say 'oh I thought I had that but I don't.' I'm not sure what people expect you to do in this situation (congratulate them on a clear colon?) but what I find most infuriating is when people end the sentence with 'but I had the blood test and I don't have it.'

It may well be a UK thing but many people aren't given full investigations when they first present with symptoms; leading doctors to diagnose 'IBS' after just a quick round of blood tests. Of course, we know inflammatory markers in our blood can give a clue to Crohn's disease; but similarly, it's not a diagnostic tool and many patients report being in a flare with perfect blood tests. I have lost count of the people who have told me 'I had the Crohn's blood test'-in other words, their inflammation markers came back normal- and therefore think everything is fine. I feel like a broken record when I reply there's no such thing as a 'Crohn's blood test'.

The fact is that most people are really misinformed about Crohn's and don't often want to hear it when you point out that the only way to see what's actually going on with your digestive system is to get a camera and look inside it. Sometimes I'll explain the diagnostic process; other times I'll just leave it be.

What to do when people say 'I have Crohn's too, well I used to...'

Oh, it was going so well until we hit the second part of that sentence. When people refer to Crohn's in the past tense it can make our blood boil because we all know that this disease is sticking with us well into the future. I had a variation of this in the strangest of places last month. My son was being baptized and as I was chatting to the vicar and I told him about my Crohn's disease, he declared 'me too!' What were the chances of thought? He went on to explain 'yes, I had it but I just stopped all the medication they offered me and just avoid chocolate!'

I've no idea if perhaps he misheard his diagnosis or was just generally uninformed about his illness and needs a doctor's appointment asap-but how do you correct a man of the cloth? So I just nodded along.

What to do when people say 'Oh, I know xxx who has that...'

In life, we often try to show a connection to things when making conversation. I'm really not sure why people tell me their third cousin has Crohn's disease; it's almost as if they expect everyone who has it to know each other and hang out in a secret club (with LOTS of toilets).

What do when people say 'Oh I have that...'

And finally, when people say 'I have that' without any catches; it's really hard not to say 'Oh do you want to be my friend!' immediately! Imagine a friend who doesn't mind if you cancel plans and you can say 'I need the toilet now' to without any strange looks. On the one hand, it's really great having someone who has the same condition as you as a friend but it comes with drawbacks too. Because even if you don't want to it can boil down to competition and comparison. I find this is rife in the chronic illness community. If I'm talking about work, someone may reply 'oh you must have a mild case as you can work!' If I talk about what I eat, a reply might be 'oh I can't eat that!' And of course, if you're dealing with stomach pain/a high inflammatory marker score/frequent toilet trips, you just know somebody else has experienced double that and not batted an eyelid.

So what's the solution? I guess I *could* just stop mentioning I have Crohn's. I'm not sure why but it just always seems to slip out in conversation, even if I'm feeling well. It would avoid all these conundrums but it really is easier said than done!

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